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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

      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.

    • Pawpawwrites profile image

      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.

    • profile image

      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.

    • Magda2012 profile image

      Magda2012 4 years ago

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

    • 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!

    • nonaweeks profile image

      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.

    • 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 ***

    • profile image

      inspirationz 5 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.

    • profile image

      olmpal 5 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.

    • srsddn lm profile image

      srsddn lm 5 years ago

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

    • malena10 profile image

      malena10 5 years ago

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

    • Spiderlily321 profile image

      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

    • 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.

    • LynetteBell profile image

      LynetteBell 5 years ago from Christchurch, New Zealand

      Thanks for sharing. Your daughter is beautiful

    • 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!

    • HalloweenRecipes profile image

      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.

    • profile image

      anonymous 5 years ago

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

    • Scotties-Rock profile image

      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!

    • Richardryder profile image

      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

    • 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.

    • 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!

    • 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!

    • chromegrrrl profile image

      chromegrrrl 5 years ago

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

    • 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.

    • 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

    • 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.

    • 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

    • 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.

    • 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.

    • 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

      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.

    • 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

      anonymous 5 years ago

      Returning with a blessing and congratulations for front page honors!

    • profile image

      miaponzo 5 years ago

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

    • 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

      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.

    • Mistl profile image

      Mistl 5 years ago

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

    • 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 :)

    • 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.

    • 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!

    • MJSchrader profile image

      MJSchrader 5 years ago

      Beautiful lens, good luck to your daughter ...

    • 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 ;)

    • 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.

    • 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.

    • 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.

    • 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.

    • gottaloveit2 profile image

      gottaloveit2 5 years ago

      Your daughter is gorgeous and talented. Another beautiful lens.

    • GonnaFly profile image

      Jeanette 6 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!

    • TIRMassageStone1 profile image

      TIRMassageStone1 6 years ago

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

    • profile image

      blanckj 6 years ago

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

    • chezchazz profile image

      Chazz 6 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.

    • elyria profile image

      elyria 6 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!

    • grandma deal profile image

      grandma deal 6 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.

    • TIRMassageStone1 profile image

      TIRMassageStone1 6 years ago

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

    • ForestBear LM profile image

      ForestBear LM 6 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.

    • gypsyman27 lm profile image

      gypsyman27 lm 6 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...

    • 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.

    • debnet profile image

      Debbie 6 years ago from England

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

    • OutdoorLily profile image

      OutdoorLily 6 years ago

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

    • 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.

    • 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

      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.

    • 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.

    • 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!!

    • lizziehumphreys1 profile image

      lizziehumphreys1 6 years ago

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

    • 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.

    • 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

    • 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!

    • kougar lm profile image

      kougar lm 6 years ago

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

    • MargoPArrowsmith profile image

      MargoPArrowsmith 6 years ago

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

    • 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.

    • CofCJenny LM profile image

      CofCJenny LM 6 years ago

      She is quite the talented artist!

    • profile image

      Oosquid 6 years ago

      Your daughter is a lovely young lady.

    • darciefrench lm profile image

      darciefrench lm 6 years ago

      Congrats on your latest blessing on this fabulous lens

    • 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! :)

    • 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.

    • LissaKlar LM profile image

      LissaKlar LM 6 years ago

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

    • 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.

    • LauraMarie LM profile image

      LauraMarie LM 6 years ago

      Your daughters are beautiful and love the artwork.

    • profile image

      anonymous 6 years ago

      Love you Connie....

      Gma

    • 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

    • 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.

    • 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.

    • 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!

    • 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

    • jptanabe profile image

      Jennifer P Tanabe 6 years ago from Red Hook, NY

      Came back to bless this wonderful lens.

    • profile image

      GabrielaFargasch 6 years ago

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

    • 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.

    • 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.

    • profile image

      ShamanicShift 6 years ago

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

    • 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

      moonlitta 6 years ago

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

    • 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.

    • trezpazz profile image

      trezpazz 6 years ago

      never heard of it thought.

    • 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.

    • KokoTravel profile image

      KokoTravel 6 years ago

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

    • 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!

    • profile image

      anonymous 6 years ago

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

    • profile image

      AmbrosiaPopsicle 6 years ago

      Blessings to you and your sweet daughter :)