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My daughter has Marfan's Syndrome

Updated on September 9, 2014

What is marfans syndrome

Marfans syndrome is a connective tissue disorder. Disorders of connective tissue affect the skeletal system, cardiovascular system, eyes, and skin. Connective tissue provides substance and support to tendons, ligaments, blood vessel walls, cartilage, heart valves and many other structures. In the Marfan syndrome, the chemical makeup of the connective tissue isn't normal. As a result, many of these structures aren't as stiff as they should be.

picture of my daughter when she was a toddler

Features of Those with Marfan's Syndrome

  • Tall stature - affected people are usually, but not always, taller than other people in their family
  • Arms, legs, fingers and toes are disproportionately long, as compared to the trunk
  • Loose-jointedness
  • Indented or protruding chest bone
  • Scoliosis
  • Flat feet
  • Nearsightedness
  • Dislocated lens

Living with marfans syndrome

what it has been like in our lives

She was not diagnosed until she was 13, but we had problems since she was born. The first problem was that she could not suck to eat. I was breastfeeding her and she was not able to get enough to eat so she lost weight in her first month. I went to a lactation consultant who was a Godsend. They had me use a contraption I had to wear around my neck with tubes to my nipples to stimulate her to suck. The container had formula in it. I had to do this every two hours for weeks but it paid off. She learned to suck. I ended up nursing her until she was 20 months old.

The next indication something was not right was that she was walking on her ankles as she started walking. I took her to Shriner's hospital in Los Angeles for help and they made her an apparatus for her shoes that to this today she needs to wear in shoes still as one leg is longer than the other which has caused pain and hip protrusion. This cannot be corrected because her connective tissue is not strong.

This lens is dedicated to my daughter

and to everyone with Marfan's syndrome

A beautiful song and tribute to marfans syndrome - I dedicate this song and lens to my daughter

 

Marfan's Syndrome explained

The diagnosis

We got the diagnosis when I took her to a specialist for what seemed to be a sudden severe scoliosis that was bending her in half and shortening her height. A specialist tested her and finally he told us she had marfan's syndrome. I started crying in the doctor's office as I read what it was. I know now you can live with it. Then I thought it was fatal which it can be as her aorta can rupture suddenly at any time. Because of the severe scoliosis she was sent to an even better specialist at Loma Linda Hospital where we lived near at that time (2006).

We saw a kind doctor there who decided she needed surgery right away (within a month) because she had two curves one of which was over 90 % the other was over 70%. The surgery she had was to straighten her spine and put in screws and a pole to help her body hold itself up. The surgery itself took over 12 hours. She needed 4 pints of blood from all the blood loss the surgery caused. All of this has not been easy for a 13 year old to go through. She is now 18. She will have to have another surgery by the time she is 23 to take care of the parts of the spine they could not do in this surgery.

She has to have yearly check ups with cardiologists and orthopedists to make sure she is doing okay

(picture is of her trick or treating as a child)

2009

2009
2009

More stories about Marfan's syndrome

 

Prevalance Rate:

approx 1 in 5,000 or 0.02% or 54,400 people in USA

Treatment of Mafan's syndrome

Children with Marfan's should have regular eye exams beginning at an early age because nearsightedness is a common condition. It can be corrected with prescription glasses or contact lenses. Many children experience problems with the lens of the eye which can become torn from its supports and become dislocated.

A child with Marfan's syndrome should be checked regularly for curvature of the spine (scoliosis). Children with scoliosis should be referred to an orthopedic surgeon who may prescribe a removable brace to stabilize the spine. My daughter has not ever worn a brace, but from her surgery she has two metal rods going up her spine in her back.

Surgery is occasionally recommended to correct an indented chest if it presses severely on the heart or lungs. Some people, without significant heart or lung problems may elect to have corrective chest surgery for purely cosmetic reasons.

Heart problems may occur because the Marfan's syndrome may cause leakage of the mitral or aortic heart valves. These valves control the flow of blood through the heart. Defects of the mitral valve may cause shortness of breath, an irregular pulse, and undue tiredness. My daughter does have a leak in her heart which has caused a pool of blood near her heart. She sees a cardiologist regularly for this and he keeps an eye on it. They may do open heart surgery and almost did, but for now they have decided not to.

Defects of the aortic valve can lead to serious heart failure. In addition, the main artery in the body, the aorta, can become dangerously weakened and rupture. Rupture of the aorta has been a cause of sudden death in some people with unsuspected Marfan's syndrome so rigorous physical exertion is discouraged.

Because these heart conditions may not produce any obvious symptoms, those with Marfan's syndrome must have regular checkups by a cardiologist to monitor the effects of treatment and to detect possible complications. Annual echocardiography (ultrasound study of the valves and aorta) is recommended. Medications (e.g., beta-adrenergic blockers) may be given to prevent aortic dilation.

Open Heart Surgery

In 2014 my daughter had to have open heart surgery because her heart was failing. She is only 21. It was failing from her mitro valve not working. It was just broken. The doctor went in and fixed it so that the valve could work again and pump blood in and out of her heart. She is still recovering.

Her talents

Despite Marfan's syndrome she lives a normal life. Not only that but she is quite talented.

a drawing of my daughter's

Some of her artwork

She sells quite a bit of it at my zazzle store

© 2009 Patricia

Have you ever heard of Marfan's syndrome

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    • profile image

      KaraLynnRussell 7 years ago

      I had not heard of Marfan's syndrome. Thank you for the information and especially for showing your daughter's art work. It's good to see the positives, too.

    • OhMe profile image

      Nancy Tate Hellams 7 years ago from Pendleton, SC

      I have heard of Marfan's Syndrome but learned so much more about it from this excellent lens. Your daughter is very talented. I loved seeing her drawing. Blessed by a SquidAngel

    • Sylvestermouse profile image

      Cynthia Sylvestermouse 7 years ago from United States

      I have never heard of Marfan's syndrome and it sounds terrifying to both the child and the parent. So glad you got the medical help and diagnosis so you could get the proper care. She looks like a really sweet girl!

    • profile image

      Leanne Chesser 7 years ago

      I've heard of Marfan's Syndrome, but never experienced it first-hand. It was good to read your personal story to learn more.

    • Ramkitten2000 profile image

      Deb Kingsbury 7 years ago from Flagstaff, Arizona

      I'd not heard of this either. Thank you for educating me about this. I'm glad your daughter is doing well, and, yes, she certainly IS talented!

    • aka-rms profile image

      Robin S 7 years ago from USA

      I never heard of Marfan's. Thanks for sharing your beautiful talented daughter's story with us! So glad she's okay!

    • HorseAndPony LM profile image

      HorseAndPony LM 7 years ago

      I have never heard of Marfan's Syndrome. You both have been very brave. I wish you the best with the continuing checkups and her next surgery. She is extremely talented. I love her drawings.

    • profile image

      anonymous 7 years ago

      Thanks Tricia

      I learned a lot about Mafan's and it's about time- I love you all

    • profile image

      GrowWear 7 years ago

      Had never heard of it. ...Your daughter is beautiful and talented. Her story here will help others. Thank you. Angel Blessed.

    • profile image

      anonymous 7 years ago

      Tricia,

      What a beautiful tribute to Connie, and a lot of information that will let others know they are not alone.

      Love you,

      Mom

    • Laniann profile image

      Laniann 7 years ago

      I have never hear of Marfan's Syndrome. I am glad your daughter is okay. She is very talented and does wonderful art.

    • profile image

      anonymous 7 years ago

      I was not aware of Marfan's Syndrome. Thank you for educating us on it. Blessed by an Angel today!

    • indigoj profile image

      Indigo Janson 7 years ago from UK

      Thank you for making this lens. Your daughter is lovely and her artwork is beautiful. Wishing her a very happy and healthy future.

    • profile image

      anonymous 7 years ago

      I had no idea you guys had been through such an ordeal. I am thankful that she was diagnosed before the disease got too far out of hand. You've both been very brave in the face of adversity. I hope that maybe one day Connie is able to relocate to a place where there is a doctor who can continue to treat her.

      Thank you for telling her story.

    • profile image

      anonymous 7 years ago

      I had no idea you guys had been through such an ordeal. I am thankful that she was diagnosed before the disease got too far out of hand. You've both been very brave in the face of adversity. I hope that maybe one day Connie is able to relocate to a place where there is a doctor who can continue to treat her.

      Thank you for telling her story.

    • profile image

      HERBMASTER 7 years ago

      I hope that you will find this helpful in regards to your daughter's disease and nutrition http://www.ctds.info/marfan.html

      I have found there are lots of diseases that have multiple names and when you look deeper, one may have answers which helps the others. There is a link between this and nutritional deficiencies which you probably know but just in case, here it is.

    • hlkljgk profile image

      hlkljgk 7 years ago from Western Mass

      thank for sharing your story. you sound like a strong family.

    • Spook LM profile image

      Spook LM 7 years ago

      Honestly I had never heard of it. Is there not a Rotary or Lions club in your area or something similar? I have no doubt that if they knew of your daughters case they would be willing to help. I'm very impressed with all of you and your courage and I think your daughter has more than a talent. She has a gift. Blessed by an Angel.

    • profile image

      jbarnhart41 7 years ago

      This is a touching and beautiful lens...your daughter is quite the artist. Good luck to you and your family. Blessed :)

    • nightbear lm profile image

      nightbear lm 7 years ago

      What a beautiful and sensitive lens. I am sorry for your daughter but I am so glad she has you. You will find a way. You are strong and it would seem so is your daughter. May God bless you both.

    • Heather426 profile image

      Heather Burns 7 years ago from Wexford, Ireland

      Very brave of you to share your story like this! Squid Angel blessed.

    • debnet profile image

      Debbie 7 years ago from England

      Thank you for sharing your story and enlightening us to this syndrome. I send good wishes for the future to you and you daughter.

    • TrinaSonnenberg profile image

      Trina Sonenberg 7 years ago from Nucla, Colorado

      What a beautiful young woman. I'd never heard of this before. Thanx for sharing your story. You are courageous and your daughter is courageous too. Wow!

    • Tyla MacAllister profile image

      Tyla MacAllister 7 years ago

      I think its so important that you have made this lens to educate people about Marfan's syndrome. I hope the attention you're bringing to it will help bring better diagnosis and treatment. It's really heartbreaking that so few doctors are specializing in treating Marfan's Syndrome.

      I have read several articles that speculated that Abraham Lincoln may have had Marfan's because he seemed to show some of the symptoms but I've never seen it explained as well as you have here.

      Your daughter is a beautiful young woman and a very talented artist and I pray that she continues to do well and remains as healthy as possible. I will share this lens with everyone I can so that more people can be come aware of Marfan's.

    • daoine lm profile image

      daoine lm 7 years ago

      I wish you and your daughter and family much strength as you all cope with this.

      I heard and started reading up about this because doctors recently thought my mother might have a form of Marfan's (she doesn't, though, after further investigation). It sounds like a very frightening syndrome, from what I read.

    • WindyWintersHubs profile image

      WindyWintersHubs 7 years ago from Vancouver Island, BC

      Congratulations on your Purple Star! Well Deserved and All the Best for Both of You. :)

    • CoolFoto profile image

      CoolFoto 7 years ago

      Your daughter is a beautiful girl! I had never heard of this condition although I have known girls with scoliosis. Congrats on your purple star. May God bless your family and provide the medical help you need.

    • GlennaJones profile image

      Glenna Jones 7 years ago from Orlando, Florida

      My grandson has a defective chromosome disease so I know how difficult it can be to live something like that. It's so encouraging to see how gracefully she has dealt with it. Her art is wonderful. Thank you for this lens. :0)

    • ayngel boshemia profile image

      Ayngel Overson 7 years ago from Crestone, Co

      I have only heard of this condition once, the creator of my favorite Broadway musical RENT, Jonathan Larson had it, but his was undiagnosed until it was too late. Diagnosis and treatment could save many lives if more people were made aware... thank you for doing your part. May your daughter have a life filled with love and laughter, because of all of the things this world has to offer those are the things worth living for.

      Blessings dear and congrats on a well deserved purple star!

    • SylvianeNuccio1 profile image

      SylvianeNuccio1 7 years ago

      I have heard of this disease once before. It is a serious condition. All the best to you and your daughter.

    • myraggededge profile image

      myraggededge 7 years ago

      I hadn't heard of this. This is a great lens and will bring it to the attention of more people. Your daughter is absolutely beautiful and very talented. *****

    • SandyMertens profile image

      Sandy Mertens 7 years ago from Frozen Tundra

      I wish the best for your daughter and you. Congratulations on your purple star.

    • WhiteOak50 profile image

      WhiteOak50 7 years ago

      You did a great job putting this lens together. I have never heard of it before, thank you for sharing it. Please know I wish the best for you and your daughter.

    • lasertek lm profile image

      lasertek lm 7 years ago

      I've never really heard about this condition before. Good thing you've come up with this lens and shared all the information and experiences that you've come across with. Thanks so much.

      I commend you for your compassion and strength. Hope that your child's story will inspire other families who are undergoing the same situation.

    • stacy mcdaniel profile image

      stacy mcdaniel 7 years ago

      I have never heard of this before. Thanks for making me aware of this condition. Best wishes to you and your family.

    • giacombs-ramirez profile image

      gia combs-ramirez 7 years ago from Montana

      Her spirit heart is absolutely amazing. Thank you for sharing this beautiful caring story with us.

    • kateloving profile image

      Kate Loving Shenk 7 years ago from Lancaster PA

      Thank you for sharing your daughter's story--and YOUR story--with us!!

      ####blessed####

    • AlisonMeacham profile image

      AlisonMeacham 7 years ago

      Thank you for sharing your daughter's story with us. Another well deserved Angel Blessing for you

    • profile image

      anonymous 7 years ago

      Sending Angel Blessings to you and your lovely daughter. Thank you for sharing - I am sure that this lens is an invaluable resource for anyone trying to find out what it is like to live with or live with someone who has Marfans Syndrome.

    • Bellezza-Decor profile image

      Bellezza-Decor 7 years ago from Canada

      Thank you for sharing your daughter's story and thank you for your blessing.

    • profile image

      OLDRUSTYBUCKET 7 years ago

      One of my classmates had a son with marfans. He was a happy kid in spite of all corrective surgery, mostly on his face. He loved the Lord. Arson in his apartment complex took him at the age of 30. During the altar call ending his funeral there were 18 or 20 hands that were counted.

    • mbgphoto profile image

      Mary Beth Granger 7 years ago from O'Fallon, Missouri, USA

      I had never heard of Marfans. Thank you for sharing.. I'm sending a blessing your way!

    • profile image

      anonymous 7 years ago

      Thank you so much for sharing, God bless her. 5 stars!

    • norma-holt profile image

      norma-holt 7 years ago

      No, this is new to me. What a hideous condition and now I know what it is there are instances of people in my past, mainly seen while traveling, that must have had it. Thak you for sharing and while I can't bless your lens I can ask the Spirit to bless your daughter and to grant her healing. 5*, fave and lens rolled

      Norma

    • imolaK profile image

      imolaK 7 years ago

      Being a geneticist I understand your problem.Thanks for sharing this story.

    • JenOfChicago LM profile image

      JenOfChicago LM 7 years ago

      Thank you for sharing your story - I didn't know much about Marfan's Syndrome, but I am also a former "alum" of Shriners Hospital!

    • sukkran trichy profile image

      sukkran trichy 7 years ago from Trichy/Tamil Nadu

      i did not know any thing about marfan's syndrome. thanks for sharing this information. i pray god for her.

    • AuthorNormaBudden profile image

      AuthorNormaBudden 7 years ago

      I've never heard of this syndrome, Patricia. By looking at your daughter's photos, I would never have guessed she suffered from such an ordeal - so, for that, it's great to be thankful.

      Perhaps you should consider creating a lens requesting donations to help your daughter get the help she needs - as one Squidooer did with her 500 hats lens...or pray that God will intervene on your daughter's behalf. After all, He knows her every need.

    • religions7 profile image

      religions7 7 years ago

      Great lens. Sorry to hear you're not able to get her to the right help. blessed by another squidangel :)

    • profile image

      mezachan 7 years ago

      Hey mom! Great lens, on Connie, it's really informative. It's good to get Marfan's Syndrome out, because a lot of people haven't even heard of it!

    • Tiffany3 profile image

      Tiffany3 7 years ago

      Never heard of this before, very informative. I hope she gets the help she needs.

    • profile image

      inkserotica 7 years ago

      So worthy of a blessing by a passing Angel :) and, of course, 5*!

    • profile image

      bengriston 7 years ago

      I have never heard of Marfans Syndrome thank you for brining it up. Hopefully there are only good things ahead for your daugter.

    • profile image

      anonymous 7 years ago

      This lens is going to help a lot of people. My son had to have titanium rods screwed into his back because he got kyphosis as a side effect of radiation treatment for his brain cancer; I saw how hard that is. I've featured this on my fan-club thank-you lens so - thank you!

    • ImproveMeU profile image

      ImproveMeU 7 years ago

      Gr8t work on your lens it brings awareness to Marfans Syndrome and beautifully honors your daughter

    • LoKackl profile image

      LoKackl 7 years ago

      I admire the mother of this adorable girl for telling so beautifully a horrid fate; that such meanness could accost a theme so fair requires great courage. Thank you.

    • profile image

      vitalindulge 7 years ago

      My big brother and my neice both have this condition. I love your lens, its very informative, yet very very personal.

      Kudos to you!

    • semas profile image

      semas 7 years ago

      Patricia,I have not heard about this disease before.I admire both of you for handling the problem with courage.Wishing the best always to your family,

      sema

    • profile image

      anonymous 7 years ago

      Hi! I came across your blog via "Google Alerts" for Marfan. Thanks for doing such a great job getting out awareness. I have Marfan too, and I'm one of the leaders for the National Marfan Foundation's teen program. We have a couple of websites to help teens connect that your daughter might be interested in: www.marfan.org/teenspace and http://nmfconnect.marfan.org.

      I also saw your post about not getting the help you need in Oregon. The 2011 NMF Conf. is going to be held in Portland, and it's my understanding the NMF is working to train doctors out there. Amy Kaplan, the NMF nurse, can help you try to connect to the doctors your daughter needs, or help your local docs get more information. Amy's email address is akaplan@marfan.org, or you could call her at 1-800-8-MARFAN. There's also a support group that covers WA and part of OR that my friend Larie Beck runs, and her contact information is on the NMF's website in the volunteer section: www.marfan.org. My email is marfmom@gmail.com and I also have a blog about being a mom with Marfan: http://marfmom.wordpress.com.

    • mythphile profile image

      Ellen Brundige 7 years ago from California

      Best of luck to you and your daughter -- I hope Maya's note below will help you get connected up with the medical care you need!

      My next door neighbor just gave birth to a lovely boy with Mobius Syndrome. It's different, but it's another one of those serious syndromes that is a challenge for child and parents throughout their lives.

      Having gone through Juvenile Rhematoid Arthritis -- nothing compared to either of those -- I have so much admiration for both kids and parents working through these kinds of challenges.

    • luvmyludwig lm profile image

      luvmyludwig lm 7 years ago

      Your daughter is beautiful and I will be sure to keep you both in my thoughts and prayers. I hope that you can get her the help she needs. Thank you for sharing your story.

    • EpicFarms profile image

      EpicFarms 7 years ago

      No, I have never heard of Marfans before this. Your daughter is quite the talented artist, and I'm so very glad to know that she is doing well :o) Nicely done!

    • profile image

      karmasherbs 7 years ago

      Thanks for the education on Marfans Syndrome... I have not heard of this.

      I have severe scoliosis, but have faired lucky with regards to surgery. I have the S shape and the degrees are almost the same with each curve. This enables me to keep myself with somewhat better posture.

      Have you heard of homeopathic tissue salts? http://www.schuesslersalts.com/573.html

      Keep strong!! - Many Blessings...

    • newbizmau profile image

      Guided Abundance 7 years ago from Mobile, AL

      By the pictures I could never tell anything was wrong. She's so beautiful. You are blessed!

    • makingamark profile image

      Katherine Tyrrell 7 years ago from London

      I'm sorry to hear you're not getting a lot of local support. Have you tried contacting the teaching hospitals which provide support for Marfans to see if they do provide any outreach support?

      My personal experience is that I've not only heard of Marfan's Syndrome - I've been tested for it by the consultant specialising in it at a London Teaching Hospital! I've also attended a Marfan Association UK Conference for people with Marfans Syndrome and met a lot of people with the syndrome. My diagnosis was another connective tissue disorder and it's probably important to remember that a number of the symptoms are common to a number of related but different tissue disorders.

      From observation of LOTS of people with Marfans at the conference, it seemed to me that the symptoms re small jaw and arched palette seemed to be frequently associated with those people who had the very pronounced long fingers and toes.

      Stretch marks also seem to be a very common feature but I don't know if that's common among the connective tissue disorders. (I've got them and my disorder turned out to be Joint Hypermobility Syndrome). Stretch marks are certainly recognised by the NHS as a symptom.

      The Marfan Association UK is http://www.marfan-association.org.uk/ - it has a lot of reading material which has been unearthed from research over the years.

      This is the National Health Service website page for Marfan Syndrome http://www.nhs.uk/Conditions/Marfan-syndrome/Pages... - which identifies symptoms, diagnosis and treatments.

      Hope this helps! Keep the feet sorted - that helps so much with everything else!

    • makingamark profile image

      Katherine Tyrrell 7 years ago from London

      Another website for you - this is the Marfan Trust http://www.marfantrust.org/index.html - and this is the page with their newsletters http://www.marfantrust.org/about/newsletters.html

      Plus this is the Dr. Anne Child is the doctor I saw (when she was working at St George's Hospital) see http://www.marfantrust.org/research/medical-direct... If you're not having any luck finding out where the centres are in the USA which specialise in this you could try contacting her. I'm sure she'd know where they are as she's been doing research on Marfans for years and years.

    • profile image

      anonymous 7 years ago

      I am being told my daughter has Marfan's. My husband and I a trying to accept this. She was 24 weeks premature and is now 8. Although she is doing well she has practically every symptom of Marfan's. We always thought it was all the premature birth. Your daughter is beautiful and your website has been a great inspiration. God bless your family!!

    • ZenandChic profile image
      Author

      Patricia 7 years ago

      @anonymous: I hope you are doing ok with the info. I know when I was first told I was scared. My daughter does ok and has had a big surgery that has helped. I just have to make sure she gets doctors to make sure she is ok. God bless your family as well!

    • ZenandChic profile image
      Author

      Patricia 7 years ago

      @makingamark: Thank you for all your resources. I appreciate that.

    • Glhall profile image

      Glhall 7 years ago

      Just awesome. I hope you make a ton from this lens. You Should. My 5 *'s are yours.

    • profile image

      grannysage 7 years ago

      A hug for your daughter from me. My daughter had back surgery too for severe scoliosis. She is 22 now and still has a lot of pain because something seems to have happened to her nerves. She has to take medicine for neuropathy, but like your daughter is doing her best to live a full life.

      We mothers wish our children never had to suffer. A sad but beautiful lens.sn

    • Lee Hansen profile image

      Lee Hansen 7 years ago from Vermont

      Despite her problems, your daughter has a brilliant smile - no doubt this is due to the wonderful support and love she receives to live as full a life as possible with her condition. Talented artist, just like her Mom!

    • seashell2 profile image

      seashell2 7 years ago

      Beautiful lens... I had never heard of this disease before now! Blessings to your daughter and family!

    • dustytoes profile image

      dustytoes 7 years ago

      I knew nothing about this disease...your daughter is a talented beauty and also brave I'll bet. This lens is a wonderful tribute to her and would be encouraging to anyone looking for information on Marfan's Syndrome. Thank you very much for visiting and blessing 2 of my lenses...I do appreciate it!

    • ZenandChic profile image
      Author

      Patricia 7 years ago

      Thank you! This lens does get google and yahoo traffic and i have some wonderful people come by and leave comments and any help they might know of and I am grateful for that.

    • Bemused in Tasm profile image

      Bemused in Tasm 7 years ago

      I have a son with Marfan's so this resonates with me . . . Beautifully done. Thanks

    • TreasuresBrenda profile image

      Treasures By Brenda 7 years ago from Canada

      Well done lens sharing your very personal story. Blessed.

    • profile image

      bdkz 7 years ago

      Thanks for sharing your story. 5 Stars and a Squid Angel Blessing!

    • KateW39 profile image

      KateW39 7 years ago

      Thank you for sharing your inspiring story. Best of luck to you and your daughter.

    • KOrazem profile image

      Seeking Pearls 7 years ago from Pueblo West

      Quite honestly I had not heard of Marfan's syndrome before. Thank-you for sharing this informative and inspiring story with us. Your daughter is beautiful and her artwork is delightful. Sending prayers from my little family to yours.

    • Cherry-Ambition profile image

      Cherry-Ambition 7 years ago from U.S.

      I've never heard of this syndrome until I read this lens. Really informative. About finding an orthopedist-- where will your daughter be attending college? If she's going out-of-state (I don't know if she can with her condition, but if so), perhaps she can find an orthopedic doctor near there. The problem would be finding other doctors to meet her other needs.

      On an unrelated note- how did you do the "blessings" modules? I want and need to do this for one of my lenses...

    • Gypzeerose profile image

      Rose Jones 7 years ago

      Thanks for the information about this illness and for sharing about your daughter's life. As a beside, there is serious speculation that Abraham Lincoln had this illness. I think your daughter is lucky to have a supportive family and the medical attention for her needs. I am praying for strength and wisdom for all who are involved with this lovely young lady.

    • ArtByLinda profile image

      Linda Hoxie 7 years ago from Idaho

      Thanks for sharing your daughters story with us, what an amazing family and support you have together. May you all be blessed with years of happiness, strength, sharing, and new adventures. Isn't Shriners hospital amazing?

    • Lady Lorelei profile image

      Lorelei Cohen 7 years ago from Canada

      I have never heard of this syndrome before...... there are just so many things that can go wrong with the human body....

      So long as we smile though - you just know that everything is A-Okay.

      Thank you for stopping by my lens on Raynauds syndrome

    • profile image

      TanyaWhaley 7 years ago

      Truly Awesome lens! Love it! 5 *'s and favorited! Happy New Year! Wish you all the best!

    • profile image

      anonymous 7 years ago

      What an awesome lens! great read! 5 *****'s and favorited! Happy New Year!

    • luvmyludwig lm profile image

      luvmyludwig lm 7 years ago

      Congrats on 100! :) My all those badges are lining up ;)

    • profile image

      MarcMooney 7 years ago

      Spent most of the time I allocate to Squidoo today simply looking for real stories about real people, thank you for sharing your story, many of these illnesses go unnoticed, personally I had never heard of this disorder, thank you for alerting us all to Marfan's Syndrome.

    • profile image

      KNicholls 7 years ago

      What a great tribute to your daughter and a wonderful lens. Angel blessed. Thank you for sharing the story. It is heartfelt and provides some really good information for people.

    • SusanDeppner profile image

      Susan Deppner 7 years ago from Arkansas USA

      I have heard of Marfan's. My sons are tall and thin and someone actually approached us and gave us a pamphlet about Marfan's, just in case they had it and didn't know it. Fortunately, they are not affected. Prayers for your daughter and for your situation of being away from the doctors that she needs.

    • poptastic profile image

      Cynthia Arre 7 years ago from Quezon City

      Your daughter is beautiful & very talented Patricia and I am praying that she gets the help she needs as soon as possible. She is very lucky to have a loving mom like you. I am blessing this lens so that even more people get to see it and hopefully it takes you somewhere closer to getting proper assistance for her. *Blessed by an angel*

    • profile image

      LKing 7 years ago

      What a wonderful story - Thank you for sharing as this may help others! We have a friend who's granddaughter was told she may have this. I was amazed to find a Lens about it! Bless your family for sharing as it can be very personal to reach out to others. Great info!

    • EdmondHoggeJr profile image

      EdmondHoggeJr 7 years ago

      Wow what a story and ive never heard of that before, and she is very brilliant and creative and blessed to have such a wonderful mother, may the Lord watch over all of you =)

    • profile image

      loganadrian 7 years ago

      I have never heard of this syndrome before. This is scary. So many things that can go wrong in our body. I wish everyone to be healthy.

    • TonyPayne profile image

      Tony Payne 7 years ago from Southampton, UK

      This is a wonderful lens, 5*****. Your family are so precious, and it's easy to see that you are a loving Mom. I love the artwork too, your daughter is very talented.

    • Grasmere Sue profile image

      Sue Dixon 7 years ago from Grasmere, Cumbria, UK

      I had not heard of this. This lens is a great source of information and hope.

      Your daughter is very talented.

    • asiliveandbreathe profile image

      asiliveandbreathe 7 years ago

      A very interesting and informative lens. I am particularly interested in the connection between this condition and Scoliosis. Enchanting artwork!

    • paperfacets profile image

      Sherry Venegas 7 years ago from La Verne, CA

      No I have not heard of this. This information reminds me of a young man that was very tall and at twenty one his lung burst and started bleeding. It was removed. It is amazing the genetic discoveries being made to help manage debilitating conditions.

      Thank you for the excellent information and the story about your daughter.

    • profile image

      Levitah 7 years ago

      Interesting lens, Loved it. 5***** and favorited.

      Thank you for sharing this. Best wishes for your beautiful daughter. I loved her art work she is very good at it.

    • Sylvestermouse profile image

      Cynthia Sylvestermouse 7 years ago from United States

      I have returned to this lens to leave my angel blessings! Added to my Squid Angel Mouse Tracks lens

    • Sandrastevens LM profile image

      Sandrastevens LM 7 years ago

      Wonderful lens! May you and your daughter have an amazing lifetime ahead of you!

    • profile image

      crystaljewels 7 years ago

      I didn't know this syndrome and I thank you for sharing your daughter's life with us.

    • profile image

      enslavedbyfaeries 7 years ago

      Thank you both for sharing such a personal story. My nephew was diagnosed with Marfans Syndrome 2 years ago after his yearly trip to the eye doctor. His opthamologist noticed a problem during the exam. Your daughter is beautiful and her artwork is superb! I especially love the black and white sketches, they are amazing!! I wish you all the best.

    • profile image

      Quirina 7 years ago

      Thank you for broadening my horizon! I don't remember having heard of this condition before, and your personal story makes a lasting impression. I too adore your daughter's artistic talent! I wish you and her that her life will continue to be as normal as you wish.

    • profile image

      anonymous 7 years ago

      I read of Marfan's syndrome in an article, and as an aspiring doctor, I started looking it up. I came across your website and I'm so glad I did. You made me see it deeper than just a syndrome; there's a person involved and their story matters more than anything. I only hope I can take time to know each patient's story when I become a doctor. PS. her art is amazing-it shows such emotion.

    • journey103 profile image

      journey103 7 years ago from USA

      Thank you for sharing your story and explaining Marfan's Syndrome. I wish your family and daughter the very best. She is an amazing artist. I love her style!

    • Franksterk profile image

      Frankie Kangas 7 years ago from California

      I have never heard of Marfans Syndrome. Your lens is quite clear and easy to read. And your daughter is quite talented. I love her artwork. Bear hugs, Frankie

    • profile image

      anonymous 7 years ago

      I have to say that you have helped me to better see this disorder... Which is a scary thing for me. My Fiancé has Marfan's Syndrom and I am 9 months pregnant with his first child. I am so scared that this may be her fate. You have helped me to see that she can be happy and vibrant just like anyone else no matter the outcome, but at the same time have shown me some scary things that may happen. I knew a little about Marfan's before I found out I was pregnant by in the last few months I have found out things that give me nightmares... I am so scared that I have sealed my daughters fate. I do appreciate you showing me a happier side to life with Marfan's! Thank you.

    • profile image

      anonymous 7 years ago

      Do you know if Cord Blood can help at all with any of the effects of Marfan's?

    • ZenandChic profile image
      Author

      Patricia 7 years ago

      @anonymous: Hi Brenda,

      I am not sure if it helps. They may know better at the Marfan's Syndrome website. I have the link on here so you can click on it and ask them there.

    • ZenandChic profile image
      Author

      Patricia 7 years ago

      @anonymous: People with Marfan's syndrome can live a long time. My daughter has a mostly normal life. She just does not do P.E. at school. She does go for walks and can do almost anything. She is very normal and very smart as well as very talented. I am sure your baby will be just fine.

    • Swisstoons profile image

      Thomas F. Wuthrich 7 years ago from Michigan

      All good wishes to your beautiful and very talented daughter...and to you as well. Hoping for the speedy development of a cure for this disease. Take care. Tom

    • mich1908 profile image

      mich1908 7 years ago

      I felt very touched after reading your lense on your lovely daughter's condition. This is the first time I've heard of this syndrome. I hope both of you and the rest of your family will continue to be brave and positive. My son was diagnose with JIA when he was 5 yrs old. He's 7 yrs old now. As a mom, I can imagine how you feel. Well, now I just can't seem to get started on my 1st lense as I'm still absorbing all the information on how to do so! There' so much to read..Hope your daughter will live the kind of life that she wants and be happy always!

    • Ram Ramakrishnan profile image

      Ram Ramakrishnan 7 years ago

      Perhaps, there will never be an answer found for the question - Why is it that some are denied certain joys of life, while some others are granted more than what seems to be a reasonable share. Religious thought-streams abound to offer speculative explanations, none of which are truly provable. It will be easy for a person who hasnât undergone lifelong trauma, to say that life has its compensations, but it is only those who suffer that really know the meaning of those words. They are the ones who know the meaning of life better.

    • Airinka profile image

      Airinka 7 years ago

      Frank story...

    • profile image

      anonymous 7 years ago

      My thoughts are with you and your daughter many times, just wanted to let you know that. I see I did fave this lens before, but my 5 Stars weren't showing-up, so I did that again. I have to say that this is a "Frank story..." but who is that Frank guy anyway? lol.

      God bless you!

      Susie

    • norma-holt profile image

      norma-holt 7 years ago

      This was one lens I had to get back to and bless. Also featured on Sprinkled with Stardust. Great work

      Norma

    • jolou profile image

      jolou 7 years ago

      I have not heard of this before. Very touching story.

    • profile image

      Serath 7 years ago

      Hi there,

      Thank you for sharing your daughters story. She seems like a very bright and talented young lady. I love her artwork and encourage your support of her.

      I my self have Marfan's...and your page has convinced me to share my unique insights thanks to the disorder.

      Yes, we can live with the condition...but it does make us different in certain respects...more so than usual. It's these differences that make us unique and give us unique insights into situations that people don't commonly come across.

      Keep sharing your experience. Not only can we help others with Marfan's but those around us without marfans that has the run of the mill condition that is 10% of the ones we have to deal with.

      All of the best to you and your daughter

    • ZenandChic profile image
      Author

      Patricia 7 years ago

      @Serath: Thank you for your words. It is good to talk to others with this. We have been alone in dealing it and just deal with it the best we can. Of course more so my daughter.

    • profile image

      anonymous 7 years ago

      Archaeologists think the Egyptian Pharoh Akhenaten had Marfan's Syndrome.

      Your daughter is in very good company. Your lens is a beautiful tribute to this unique condition.

    • burgessvillian profile image

      burgessvillian 7 years ago

      This lens is an awesome way of letting others know about Marfan's. Very well done. I didn't know of this before.

    • indigoj profile image

      Indigo Janson 7 years ago from UK

      Just paying a little return visit to this excellent lens to leave an~*~* Angel Blessing *~*~ here. :)

    • WhiteOak50 profile image

      WhiteOak50 7 years ago

      This is a very well written lens! You did a great job putting it together Patricia!!

    • profile image

      Jameliadesigns 7 years ago

      I have a family member with this disorder too.

      In my research into minerals for my book The Magic of Minerals in Crystal Healing (which is based on mineral nutrition) http://jeanettestein.webs.com/crystalmineralbook.h... I discovered that a zinc deficiency can create all the exact symptoms of Marfans syndrome. This also fitted with the diet eaten and also with him having a zinc deficiency. Certainly worth looking into.

    • RuthieDenise profile image

      RuthieDenise 7 years ago

      What a beautiful girl. All your girls are beautiful. I have never heard of this disease. I will pray for y'all.

    • profile image

      anonymous 6 years ago

      Gday i live in australia i love surfing ,fishing ,camping ,big machines ,music and i have a pectus excavation (specilist in aussie said biggest one he:s seen ) in which i had the chance to get it corrected (cosmetic only) when i was 17 but i thought... nah stuff it.Im 29 now and it still hasn't made much difference with the girl factor you just have to pick the right type (and they weren't that bad looking either.)Also i have congenital gloucoma which left my left eye blind when i was a baby. Im about 6 foot and lean so with back problems i spose i could have marfan.Anyway I just wanted to say that don't stress too much about it.This goes to daughter AND mum i tell you if my mum could set up a web page on me when i was 17 she would have and in doing so embarresed me too no end LAUGHS.All the best.BEN from aussie.

    • Spook LM profile image

      Spook LM 6 years ago

      Just dropping by again. Blessed by an Angel.

    • eclecticeducati1 profile image

      eclecticeducati1 6 years ago

      What a beautiful and talented young lady you have! This lens is very educational. This is a condition that I had not heard about before. My little boy has some spinal issues. Luckily, they turned out not to be too serious (at least it seems so far), but I still remember the day the doctor told us that he thought he would have to have spinal surgery. I felt like the entire world fell on my shoulders at that minute. Luckily, after a MRI, it was determined that he did not need it. He did have to undergo surgery on his neck to loosen a muscle that was too tight and was pulling his head down. That was scary enough. It's hard seeing our children go through these things. I know I want to spare him all of this, it is just so hard. It is good to see that your daughter has turn out so well adjusted! I hope my little boy is the same. Blessed by an Angel.

    • profile image

      SofiaMann 6 years ago

      When a child is born the mothers expect it to be perfect, a princess. But sometimes life brings surprises ... We learn to live with it and we become strong. New joy flow from watching them grow and overcome difficulties. Thanks for sharing your experience. I have a child with Klippel Trenaunay syndrome ... maybe one day I write about this.

    • profile image

      Tarra99 6 years ago

      Blessed and featured here: http://www.squidoo.com/100-blessings

      Thank you for opening up and sharing your /your daughter's story.

      Sharing knowledge and experience brings people together.

    • CoolFoto profile image

      CoolFoto 6 years ago

      I had never heard about this syndrome. Your daughter is a beautiful girl.

    • NicoleJoy profile image

      NicoleJoy 6 years ago

      Thank you for this lens, I was not familiar with Marfan's Syndrome. I love your daughters artwork, it is beautiful!

    • profile image

      AmbrosiaPopsicle 6 years ago

      Blessings to you and your sweet daughter :)

    • profile image

      anonymous 6 years ago

      She is so lovely .. Blessings to her and you all the times :)

    • profile image

      anonymous 6 years ago

      Your daughter and you are both amazing. She is a gifted artist, I love her work. I love this lens. Touching to say the least!

    • KokoTravel profile image

      KokoTravel 6 years ago

      Nice job... I know Marfan's as a nurse...

    • javr profile image

      javr 6 years ago from British Columbia, Canada

      I have never heard of it. Thank-you for sharing your story. This lens has been blessed.

    • trezpazz profile image

      trezpazz 6 years ago

      never heard of it thought.

    • beerhead profile image

      beerhead 6 years ago

      Wishing you and your daughter all the best wish i could say more. My prayer's are with you, have a very happy holiday season.

    • profile image

      moonlitta 6 years ago

      Beautiful art works! Wishing you and her all the luck and goodness on earth!

    • profile image

      anonymous 6 years ago

      Your daughter really is a natural artists, I hope she continues. Thank you for sharing her story I have not heard of this disease before, and your page is very informative.

      Hope you all have a wonderful holiday season :)

    • profile image

      ShamanicShift 6 years ago

      Awesome informative lens -- a very helpful, interesting, beautiful, thought-provoking, heart-warming read and reference.

    • blue22d profile image

      blue22d 6 years ago

      Bless you and your daughter. She has wonderful talent. Thank you for this lens as before this visit, I had never heard of this syndrome.

    • BunnyFabulous profile image

      BunnyFabulous 6 years ago from Central Florida

      Amazing lens. Thank you for sharing your daughter's story, and I'll be praying for her health and continued joy in pursuing her artwork and her dreams. My close friend's husband had undiagnosed Marfan's syndrome and died from a heart aneurism at age 30. Glad that you're getting the word out about treatments and earlier diagnosis.

    • profile image

      GabrielaFargasch 6 years ago

      I added your lens at my "lens hospital"! :)

    • jptanabe profile image

      Jennifer P Tanabe 6 years ago from Red Hook, NY

      Came back to bless this wonderful lens.

    • profile image

      anonymous 6 years ago

      God bless I am glad you are doing so good, I too have Marfans and know how hard life can be. I just turned 50 and living a pretty good life, well might need surgery soon but I feel I have came a long way thanks for putting this site together

    • WhiteOak50 profile image

      WhiteOak50 6 years ago

      Good Morning! Just letting you know that I featured this page at: Lens Sightings Stop by and pick up your badge!! Congratulations!

    • KarenHC profile image

      Karen 6 years ago from U.S.

      Thought I'd let you know that I found this page on Lens Sightings (I just saw WhiteOak's comment below). This is a truly remarkable lens -- I was touched by reading it.

    • nightbear lm profile image

      nightbear lm 6 years ago

      Hi Patricia. I just stopped by after seeing you on lens sightings. I love this lens and your daughter(s) are so beautiful, just like you.

    • Harshitha LM profile image

      Harshitha LM 6 years ago

      I do not know if I should say great lens. Not that it is not. I loved it but also was touched by what I read. Your daughter is sure talented. May God Bless You Both

    • profile image

      anonymous 6 years ago

      Love you Connie....

      Gma

    • LauraMarie LM profile image

      LauraMarie LM 6 years ago

      Your daughters are beautiful and love the artwork.

    • junecampbell profile image

      June Campbell 6 years ago from North Vancouver, BC, Canada

      I have not previously heard of this syndrome. Your daughter is a beautiful girl.

    • LissaKlar LM profile image

      LissaKlar LM 6 years ago

      I've never heard of this before. Your daughter is very talented and beautiful!

    • rlivermore profile image

      rlivermore 6 years ago

      I had never heard of this before. Thank you for sharing about your beautiful daughter and her artistic talent.

    • EuroSquid LM profile image

      EuroSquid LM 6 years ago

      Great lens! It deserves yet another angel's blessing. Your daughter seems very sweet. I think you are a very proud mom! You deserve to be one, too! :)

    • darciefrench lm profile image

      darciefrench lm 6 years ago

      Congrats on your latest blessing on this fabulous lens

    • profile image

      Oosquid 6 years ago

      Your daughter is a lovely young lady.

    • CofCJenny LM profile image

      CofCJenny LM 6 years ago

      She is quite the talented artist!

    • Charmcrazey profile image

      Wanda Fitzgerald 6 years ago from Central Florida

      Your daughter's artwork is lovely. Visual arts is a talent I wish I had. This is a very informative lens.

    • TheLittleCardShop profile image

      Malu Couttolenc 6 years ago

      Your daughter's art is beautiful she is very talented. Congratulations on your very well deserved blessings and Purple Star

    • MargoPArrowsmith profile image

      MargoPArrowsmith 6 years ago

      Informative, touching and personal I am so honored to Angel Bless this lens

    • kougar lm profile image

      kougar lm 6 years ago

      Informative and touching lens. Thank-you for sharing your daughter and her talent with us.

    • Virginia Allain profile image

      Virginia Allain 6 years ago from Central Florida

      You've covered this personal topic quite well and made it useful to others. Very well done!

    • profile image

      Matie 6 years ago

      I've been really touched by this lens, I didn't know that such condition existed until now. It goes to show that people can always strive to survive for the best, no matter the difficulty, thank you very much for this lens

    • blessedmomto7 profile image

      blessedmomto7 6 years ago

      I had not heard of this before. You gave great information and I love all the pictures. Angel Blessed.

    • lizziehumphreys1 profile image

      lizziehumphreys1 6 years ago

      i have never heard of this before, but your daughter is lovely and her drawings are amazing!!

    • jvsper63 profile image

      jvsper63 6 years ago

      This is the first I heard of it. You covered this syndrome well. This is a very touching lens, you have handled this very well, I know it has to be good for your daughter to have a mom so involved with Marfan's syndrome. You are lucky to have each other. Also your daughter is quit the artist. I wish you all the best in this fight.It sounds like you both are dealing with this in a positive way. That's Great Well done!!

    • Pip Gerard profile image

      Pip Gerard 6 years ago

      Thank you for growing the awareness.. this is the first I'd heard of it. Your daughters are all very beautiful.

    • profile image

      anonymous 6 years ago

      As a nurse, I was fairly well informed about Marfan's, but I've never known anyone who was living with it. You and your daughter seem to be coping well, and and keeping a positive attitude. You've done an excellent job with this lens, and provided a lot of information on a condition that is not well-known.

    • Paul Ward profile image

      Paul 6 years ago from Liverpool, England

      Angel Blessed: that's some for the lens, some for you and most for your daughter for prospering.

    • profile image

      Floraluniverses 6 years ago

      Your daughter is talented indeed! Her drawings are adorable! Wishing you all the bes, and no I've never heard of Marfan's syndrome.

    • OutdoorLily profile image

      OutdoorLily 6 years ago

      Wow! What a talent, her artwork is amazing! Thanks for sharing and best wishes :)

    • debnet profile image

      Debbie 6 years ago from England

      Best wishes to your daughter. Blessed by a Squid Angel ;)

    • darciefrench lm profile image

      darciefrench lm 6 years ago

      Lovely description of your journey with your child and Marfan's Syndrome. You're both bright lights and I appreciate your contributions. Many thanks.

    • gypsyman27 lm profile image

      gypsyman27 lm 5 years ago

      I am hearing of this disorder for the first time. I am a trained artist and your daughter's talent is obvious to me and anyone who sees her wonderful work. Thank you for sharing your story and I wish you and your children well. See you around the galaxy...

    • ForestBear LM profile image

      ForestBear LM 5 years ago

      No I had never heard of this disorder, thank you for sharing your story. Her artwork is wonderful. Best wishes to you and your daughter.

    • TIRMassageStone1 profile image

      TIRMassageStone1 5 years ago

      Never heard of this syndrome until now, wonderful story and the girl is beautiful.

    • grandma deal profile image

      grandma deal 5 years ago

      You have an extremely beautiful and talented. I get the feeling here that you are very proud of her. And I'm betting her sisters are every bit as beautiful and talented. Very informative lens. I learned something new today.

    • elyria profile image

      elyria 5 years ago

      Today I learned something completely new from your Lens as I never heard of marfans syndrome before. Your daughter is so beautiful and so talented, I love her artwork, so inspirational! Thank you for sharing this story and big hugs to you and your daughter!

    • chezchazz profile image

      Chazz 5 years ago from New York

      Thank you for sharing your experience with Marfan's. Your daughter has talent and I am sure she, you, and the rest of your family realize how lucky you are to have each other! Kudos to you and yours for enlightening all of us.

    • profile image

      blanckj 5 years ago

      This was great and very informative. Thanks for sharing. Blessed!

    • TIRMassageStone1 profile image

      TIRMassageStone1 5 years ago

      Truly inspirational. I'm grateful to you for sharing.

    • GonnaFly profile image

      Jeanette 5 years ago from Australia

      I had never heard of Marfan's syndrome before. Thank you for sharing about your daughter. It certainly has not stifled her creativitiy!

    • gottaloveit2 profile image

      gottaloveit2 5 years ago

      Your daughter is gorgeous and talented. Another beautiful lens.

    • Lady Lorelei profile image

      Lorelei Cohen 5 years ago from Canada

      It is so sad the many things that can go wrong with the human body. I had not heard of marfans syndrome before and I send my wishes for her health along with this note. Happy Holidays.

    • Brite-Ideas profile image

      Barbara Tremblay Cipak 5 years ago from Toronto, Canada

      So hard to go through this, our children are everything to us. Every breath we take we feel the beat of their hearts along with ours. All the best to you and your daughter.

    • Gigglish profile image

      Gigglish 5 years ago

      Your daughter is beautiful! And talented as well. And you are both amazing for dealing so well with such a difficult issue.

    • LisaDH profile image

      LisaDH 5 years ago

      Thank you for sharing. I don't know anyone with this condition, but I bet this page has helped many people who are going through the same thing.

    • SheGetsCreative profile image

      Angela F 5 years ago from Seattle, WA

      Courageous of you both to share your story. I can see where she gets her talent from ;)

    • MJSchrader profile image

      MJSchrader 5 years ago

      Beautiful lens, good luck to your daughter ...

    • Johanna Eisler profile image

      Johanna Eisler 5 years ago

      Thank you and your daughter for being willing to share your story and educate people about Marfans Syndrome. I admire and appreciate you both.

      Congratulations, Jewels, on making the front page!

    • RaintreeAnnie profile image

      RaintreeAnnie 5 years ago from UK

      Thank you for sharing this, I learnt a lot from it. Your daughter is lovely and very talented.

    • katiecolette profile image

      katiecolette 5 years ago

      Your daughter is so talented! She would make a great book illustrator - I know kids would LOVE her fairies :)

    • Mistl profile image

      Mistl 5 years ago

      So many unknown illnesses out there. Thanks for Creating more awareness of Marfans Syndrome!

    • profile image

      AlohaAstro 5 years ago

      My heart goes out to you and your daughter. I have a 28 year old daughter with Ehlers Danlos Syndrome, which is also a connective tissue disorder, and her symptoms are similar to your daughter's. My daughter is currently being seen by a cardiologist for carotid artery problems and an enlarged aorta. She has had a valve that goes gush-slush since childhood. Although my girl had problems with nursing and keeping food down when she was a baby, we didn't know what was really going on until she was 19 and needed a hysterectomy. She has also had surgery to correct a collapsing ankle. She was born with her eyes seriously deformed and has limited nearsighted vision in only one eye. Just like Marfan's, EDS has different severity in people. For my daughter, having a "normal" life isn't possible anymore. Sadly, some doctors think conditions like this are not life threatening, but they certainly can be. Our scariest times have been after surgeries, because her tissue and vascular system is weak and doesn't heal easily. I know her condition was most likely caused by my exposure to pesticides while pregnant with her. She has friends online she has made through various support forums and although there isn't a big awareness of these disorders, there seems to be far too many young people suffering from them. My daughter's biggest complaint is that school age children and senior citizens are supported in getting help when they have a disability, but there seems to be little available for young adults,which is sad.

    • DogWatchColumbus profile image

      DogWatchColumbus 5 years ago

      What a wonderful tribute to your amazing daughter and a great lesson for the rest of us...

    • profile image

      miaponzo 5 years ago

      Thank you so mu ch for sharing this with us here. :) Blessed!

    • profile image

      anonymous 5 years ago

      Returning with a blessing and congratulations for front page honors!

    • SecondHandJoe LM profile image

      SecondHandJoe LM 5 years ago

      Sadly, this is another syndrome I knew nothing about, but I do now. I also think I know someone who may suffer with this now. This lens has opened my eyes more to both the challenges we face in life, and the triumphs of the human spirit in overcoming them-- and your daughter IS very talented!

    • profile image

      Edutopia 5 years ago

      Excellent lens, very informative. I hadn't really known much of Marfan's syndrome before reading and now I am glad I did. It is also great to hear that although your daughter must contend with this syndrome she has managed to excel in life. Truly an inspiration.

    • Julia Morais profile image

      Julia Morais 5 years ago

      I've never heard of Marfan's syndrome before today. Hope your talented daughter gets good medical treatment and lives the life she deserves to live. God bless.

    • profile image

      ambrking 5 years ago

      Excellent lens. I am not familiar with Marfan's syndrome and this lens made me aware of it. Thanks you for sharing this.

    • Scraps2treasures profile image

      Scraps2treasures 5 years ago

      Excellent lens and congrats on making it to the front page. My daughter's appendix burst when she was 13 and when she was in the hospital for that, it was brought to our attention that she could have Marfan's syndrome. After taking her to several doctors, including a cardiologist, they never could definitively diagnose her. We were told she had about 50% of the characteristics. He told us to let her live her life like normal and she has fortunately never developed any problems.

      I am glad to hear your daughter is doing well.

    • writerkath profile image

      writerkath 5 years ago

      Outstanding and educational lens - and undoubtedly a source of comfort and resources for others who are affected by Marfans Syndrome. I had not heard of this until I saw your lens today, and I thank you so much for taking the time to help us all understand this. My very best for your beautiful daughter and you, her beloved family! Blessings all the way around... :) Kath

    • TransplantedSoul profile image

      TransplantedSoul 5 years ago

      Your daughter is lucky to have such an educated mother! This looks like a very difficult thing to deal with. My thoughts are with you.

    • Merstarr profile image

      Merstarr 5 years ago

      I love that you put so much effort into nursing her. By doing so you likely improved her overall health :) Glad there are moms like you in the world, who will stop at nothing to give their deserving child the best they can have. Xo's for you both

    • profile image

      AliciaMae 5 years ago

      Some historians believe that President Abraham Lincoln had Marfan's because of his stature and long limbs. Genetic conditions are actually much more common than people think, but we're only really learning about them now because of the capability to diagnose via genetic tests.

    • chromegrrrl profile image

      chromegrrrl 5 years ago

      I'm so glad you posted this lens. Thanks for all the great recommendations.

    • laporter79 lm profile image

      laporter79 lm 5 years ago

      I have a great friend with this disease, and my father in law died of complications from this (aortic annurism) My husband is over 7 foot tall, but tested negative for Marfan's. So, I dunno...a rough disease and God Bless her for being a trooper!

    • profile image

      slotowngal 5 years ago

      I'd never heard of Marfan's Syndrome. Thank you for sharing your daughter's story and for a wonderfully informative lens. Angel blessed!

    • KimGiancaterino profile image

      KimGiancaterino 5 years ago

      I had not heard of Marfan's Syndrome until your lens. Thanks for sharing information of such a personal nature. Your daughter is beautiful and talented.

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      Risteard O'Marcahain 5 years ago from Wales

      A very brave girl - cead mile failte for both of you to my what I love about Ireland lens for St Patricks day

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      Clairissa 5 years ago from OREFIELD, PA

      Your daughter is beautiful and extremely talented. You must be so proud of her. I have never hear of Marfan's syndrome. Thanks for the sharing your story. Blessed!

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      anonymous 5 years ago

      your daughter is beautiful and adorable!! "AWESOME" hugs and love!!

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      HalloweenRecipes 5 years ago

      You and your daughter are very amazing people and I am thankful that you shared your wonderful story with me. This story helps to remind me how very remarkable people are.

    • KReneeC profile image

      KReneeC 5 years ago

      Such a wonderful lens. Thank you so much for sharing you and your daughters story. She is absolutely beautiful. I see that you said that you breastfed her until she was 20 months! That is incredible! I commend you!

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      LynetteBell 5 years ago from Christchurch, New Zealand

      Thanks for sharing. Your daughter is beautiful

    • desa999 lm profile image

      desa999 lm 5 years ago

      Thank you for sharing this and all the best for the future to you and your daughters.

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      Spiderlily321 5 years ago

      Amazing and very touching lens. My 3 yr old has Epilepsy. I wish the best to you and your beautiful daughter. I added you to my featured lens list under the section "Marfans syndrome". The lens is called do you want to be part of a support circle...? Thank you so much for sharing this

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      malena10 5 years ago

      My mother has cerebral palsy since birth. I wish you as many happy moments together and fun in the future :)

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      srsddn lm 4 years ago

      Surprisingly never heard about it. Thanks for sharing information. I wish your daughter all the best.

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      olmpal 4 years ago

      I have never heard of Marfan's syndrome before. Thanks for sharing! Your daughter is beautiful and I wish you and her all the best.

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      inspirationz 4 years ago

      I hadn't heard about Marfan's syndrome before either - Thank you so much for sharing and teaching us about it. Wish you you and your family all the best.

    • JJNW profile image

      JJNW 4 years ago from USA

      I have, yes. My son was tested, but does not have it. Love to you all. Your daughter is beautiful and talented - like her Mom! *** Blessed by a SquidAngel ***

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      Nona Weeks 4 years ago from Florissant, CO

      This is the first time I hear of it. Your daughter is a very talented and special girl. It takes strength to deal with those things. Your strength and hers. My prayers are with your family. Thank you for sharing such a special lens.

    • Rosaquid profile image

      Rosaquid 4 years ago

      Yes, I know someone who has Marfan's syndrome. your daughter is a lovely young woman with a great deal to offer. I appreciate your sharing this. Thanks!

    • Magda2012 profile image

      Magda2012 4 years ago

      First time to hear about this. thanks for sharing your personal story.

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      laniparis 3 years ago

      Your daughter is gorgeous and extremely talented. I have a few symptoms of Marfan's Syndrome (high palate in my mouth, flat feet, slight scoliosis, long fingers and hands), the doctors refer to me as Marfanoid. I also have other health issues so I'm continually seeing doctors. Not fun but I refuse to let it get me down.

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      Jim 2 years ago from Kansas

      Wow, glad she is now living a normal life, but what a lot to deal with. Love her art work.

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      I know Marfan's very well 2 years ago

      My daughter had a rare form of Marfans. She would be 45 now She died at age 9. There were many Doctors who just scratched their heads when they met her. When she died in 1979 They wanted us to let them dissect her but we refused. She was a beautiful little girl I miss her every day.

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