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Klippel Trenaunay Weber Syndrome: My Story

Updated on August 23, 2017

My KTW Diagnosis

My mother noticed when I was born that something wasn't quite right. One of my hands appeared longer than the other and it looked red. She tried bringing it up to the doctors but they blew off her claims. She was a new mother of a premature infant, she was just looking for problems. They couldn't know how wrong they actually were. I was diagnosed at four years old because my mother wouldn't give up until someone figured out what was wrong. I was born with a rare, unexplainable syndrome called Klippel Trenaunay Weber Syndrome.

This picture is one that I took myself indicating the difference in the length of my hands. This measurement is taken by resting my elbows on the desk and placing my hands together. It is not falsified or edited in any way and can be found here

Statistics

According to the Genetics Home Reference 1 in 100,000 people worldwide are affected with Klippel Trenaunay Webber Syndrome

The Symptoms

It was quite obvious at my birth that something wasn't right and the older I got, the more apparent it became. Not only did I have the size difference between my arms, but there was the large birthmark that covered the majority of my right hand. There was a third sign as well and that was varicose veins. I was such a tiny little baby, weighing in at only 4 lb. 1 oz. I was born exactly two months early, I was due on November 13 and born September 13. My parents were the only ones who noticed the problem and they couldn't get anyone else to recognize it for what it was. When we moved to the United States, I was only 5 months old and my mother did everything she could to get a diagnosis. I saw so many doctors and was referred to more after every appointment. When I was four years old, my mother took my sister and I over to England to visit family and got me in to see a specialist while we were there. It was at that appointment that my family was finally given an answer...I had KTW. When we got back to the U.S. we had a meeting with a genetic counselor so they could explain everything. It was a scary time but I am very lucky. I only have a mild case of KTW, it could have been so much worse. These pictures show the port wine stain on my right hand.

Port Wine Stain

Click thumbnail to view full-size
This is the port wine stain on the back of my right hand.This is the port wine stain on the palm of my right hand.
This is the port wine stain on the back of my right hand.
This is the port wine stain on the back of my right hand.
This is the port wine stain on the palm of my right hand.
This is the port wine stain on the palm of my right hand.

Why I'm Lucky

Throughout the many years I was seen at Shriner's Hospital, I saw so many people whose problems far outweighed my own. It was a very humbling experience to see people that have the same problem I do and cannot walk or have many more consequences associated with their disease. I was lucky in that the syndrome only affected my right arm. There are many people that have one leg 3 times larger than the other and port wine stains on their faces. In my case, people don't even realize that there is anything different about me until I point it out. The only medical consequences associated with my disease are arthritis and weakened joints. I was diagnosed with juvenille arthritis when I was 11 years old and have had difficulty with my joints since I was a young child. My joints give out on me easily and most people think I'm just clumsy. I experience more sprains than anyone else I know. The worst one occurred when I went for a walk around the block. My ankle gave out on me and I fell on top of it. Thankfully nothing was broken, but I ended up on crutches for six weeks to give it a chance to heal. The damage to my tendons from the numerous sprains cannot be fixed and every additional sprain makes the problem worse. I was told by my doctor at that time that I will continue to sprain easily because my tendons have stretched like an overused rubberband over the years and they can no longer support my joint as they are supposed to. Although this issue can be quite painful, when I consider the problems of others, I know that I have had it very easy.

Being Double-Jointed

The most noticeable thing about my case is the degree to which I am double jointed. When I was about five years old, my younger sister got mad at me and tried to bend my pinkie finger backwards. Boy was she surprised at how far back it went. She screamed in fear and I laughed because it didn't even hurt.

My right hand is so double-jointed that my fingers cannot lay straight off of a flat surface. Not only do they bend backwards to an alarming degree, but the individual joints can be bent. My left hand is also double-jointed, but not to the same degree as my right.

After the sprained ankle that I mentioned above, I decided it was safer for me to walk the treadmill at my school. When I got off, my knee was purple and it hurt so badly that I could hardly put any pressure on it. When I finally stopped being stubborn and went to the doctor (two weeks later), I found out that my knees were double-jointed as well. Not only do my knees move in a forward-backward direction, they also move in a side-to-side motion. While I was walking on the treadmill, my knee moved sideways and I pinched a nerve. I was in pain for two weeks straight and all the doctor had to do was massage my knee to release that nerve. At least I know what to do now since that wasn't the last time it happened!

Double-Jointed

My being double-jointed may or may not be attributed to my disease, it is honestly unknown. It could be coincidental that I am severely double-jointed in the same hand that is affected by my disease or it could be because of it: no one really knows for sure. However, it is not a definitive indication of this disease. There are lots of people that are double-jointed for no reason at all.

Demonstrating my double-jointedness - Images may be disturbing to some

Click thumbnail to view full-size

So, what is your reaction to my hands?

See results

All in All

When it comes down to it, I was beyond lucky that I was not seriously affected with KTW. Several patients with abnormal growth will have to face the loss of the affected limb. I was told that if my legs became affected at any time (I was monitored until my growth plates disappeared) that I would have to face that loss as well. I am beyond grateful that I got off as easily as I did. I live a normal life with very little in the way of complications. The syndrome is very rare and happens sporadically. That means that it is not genetic and cannot be predicted. It is just one of those things that happen. I consider myself lucky that it happened to me because it is a part of what makes me who I am!

Let me know what you think

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    • flightofdestiny2 profile image
      Author

      flightofdestiny2 6 years ago

      @jimmyworldstar: Yes, but they ache for no reason at all due to my arthritis as well.

    • profile image

      jimmyworldstar 6 years ago

      I've heard of these symptoms but never knew the name. It's good that you have a mild case and it doesn't prevent a lot of physical mobility for you. Do your joints start to ache if you've been running or walking for a long time?

    • Johanna Eisler profile image

      Johanna Eisler 6 years ago

      Thank you for being willing to share your story. You have educated so many of us who have never heard of your syndrome before. I love your positive attitude. Congratulations for making the front page!

    • flightofdestiny2 profile image
      Author

      flightofdestiny2 6 years ago

      @Coreena Jolene: I certainly hope so. I never expected this kind of response when I wrote this lens, but I couldn't be happier.

    • Coreena Jolene profile image

      Coreena Jolene 6 years ago

      Thank you for sharing your story. I also read several comments on the duel from others with this disease. I bet you sharing this will bring some inspirations with those that are struggling with it.

    • profile image

      anonymous 6 years ago

      I was not aware of Klippel Trenaunay Weber Syndrome and appreciate you educating me about it. Keep up the positive outlook and your efforts at public awareness! Blessed!

    • Merstarr profile image

      Merstarr 6 years ago

      Very interesting and informative lens. You have an exceptionally positive outlook on life that shines as an example to those are in similar circumstances and lack the spirit. Good for you for being so open as to share your story, and a great lens :) I am just going to check out you part 2 now :)

    • Merstarr profile image

      Merstarr 6 years ago

      Very interesting and informative lens. You have an exceptionally positive outlook on life that shines as an example to those are in similar circumstances and lack the spirit. Good for you for being so open as to share your story, and a great lens :) I am just going to check out you part 2 now :)

    • Leilani-m profile image

      Leilani-m 6 years ago

      Great lens! I admire your courage to openly speak about your condition and your positive spirit :)

    • profile image

      seedplanter 6 years ago

      Hey, you know what? Each of us has *something*. I love your spirited lens, and it's informative too. I have a granddaughter who was born with multiple disabilities so I agree with you that your condition could be much worse. Your time at Shriner's obviously taught you much, and I admire your grateful attitude. Your sense of humor ain't bad either! ;)

    • JoleneBelmain profile image

      JoleneBelmain 6 years ago

      It is so sad that people have to live with disease and pain every day, it just isn't fair... You are a very brave and wonderful spirited person, thank-you for sharing your story!

    • profile image

      anonymous 6 years ago

      I'm glad to have reviewed this tonight, truly a gem as it speaks from your heart. I too seek out to help those in need. I've put together two lens to help make aware of people about cystic fibrosis that you may check out. But your disease is much more rare of course and keep up the good fight!

    • Sunflower Susan profile image

      Sunflower Susan 6 years ago

      Thank you for sharing this, I'd never heard of it before today.

    • flightofdestiny2 profile image
      Author

      flightofdestiny2 6 years ago

      @yayas: If I am to have been "picked" as spokesperson for KTW, I am honored. Thank you so much for your kind words, they mean so much to me.

    • yayas profile image

      yayas 6 years ago

      I never heard of this particular syndrome before, but you captured me with the very interesting way you chose to speak of it. Although I am sorry that you have been 'picked,' as it were to represent people who deal with this, I must say, a better spokesperson could not have been chosen. Your words lend authority an' impact to something that might otherwise continue in a blind path for many of us. Thank you for telling your story so well.

    • flightofdestiny2 profile image
      Author

      flightofdestiny2 6 years ago

      @anonymous: I don't know of any charities that sponsor KTW but I would recommend doing something for Shriner's Hospital. They do so much for people with so many different diseases and the majority of their patients are unable to pay. Helping them out helps so many others, those with KTW as well.

    • profile image

      anonymous 6 years ago

      @flightofdestiny2: I know from experience that splints don't always work and hurt a lot. Also if the disability is gonna get worse, it's gonna get worse nothing you can do but keep kn going and have some vodka on hand! ;-) your right it isn't a deformity!

    • profile image

      anonymous 6 years ago

      Hiya! Do you know of any charities about our condition? I want to be an event organiser and thought what's better than doing it for something I know so much about! I found your blog when I was searching for one! Lol

    • profile image

      anonymous 6 years ago

      Wow, I'm without words. Blessed!

    • Ilonagarden profile image

      Ilona E 6 years ago from Ohio

      Congratulations on LOTD- your story is fascinating and I love the pictures of your hands. I,too, am glad you don't have the worst of the syndrome.

    • Srena44 profile image

      Srena44 6 years ago

      nice lens

    • Faye Rutledge profile image

      Faye Rutledge 6 years ago from Concord VA

      Very interesting. You have a great outlook. Congratulations on LotD!

    • Lee Hansen profile image

      Lee Hansen 6 years ago from Vermont

      Congrats on a most interesting and uplifting LOTD. I went on to read about your pregnancy story, too.

    • profile image

      anonymous 6 years ago

      Congratulations on LotD. What and interesting lens. Thanks for sharing.

    • profile image

      anonymous 6 years ago

      Congrats on LotD. I never heard of this before and your lens was a fascinating read. I learned something and that always makes a day good. Thank you!

    • Mishael A Witty profile image

      Mishael A Witty 6 years ago

      Great story. Love your writing style. Thank you for sharing - and congratulations on a well-deserved LOTD!

    • MoiraCrochetsPl profile image

      MoiraCrochetsPl 6 years ago

      Congratulations on your LOTD! I love your story!

    • MoiraCrochetsPl profile image

      MoiraCrochetsPl 6 years ago

      Congratulations on your LOTD! I love your story!

    • SheilaVine LM profile image

      SheilaVine LM 6 years ago

      thank for sharing

    • TheHealthGuy LM profile image

      TheHealthGuy LM 6 years ago from U.S.A.

      Congrats on LOTD! Very interesting lens and you have an extremely good attitude.

    • PaulosDK profile image

      PaulosDK 6 years ago

      Well done on LOTD, I really enjoyed it, didn't know of the diseases existence. You seem to have such a good outlook on life despite your knocks.

    • NightMagic profile image

      NightMagic 6 years ago

      You definitely deserve Lot-D for this lens. That is one scary disease. I didn't know it existed. I'm glad to hear you weren't affected as much as some are.

    • RawBill1 profile image

      Bill 6 years ago from Gold Coast, Australia

      Wow! I had not heard of this syndrome before. You are so lucky that it is not worse and that you can function almost normally. Congratulations on LOTD and thanks for sharing your story.

    • KimGiancaterino profile image

      KimGiancaterino 6 years ago

      Thanks for sharing your story. Congratulations on LOTD!

    • pheonix76 profile image

      pheonix76 6 years ago from WNY

      Congrats on LotD! I had never heard of this syndrome, thanks for sharing. :)

    • profile image

      giunda 6 years ago

      @giunda: that same in angry birds

    • profile image

      giunda 6 years ago

      i like this ring

    • Nancy Hardin profile image

      Nancy Carol Brown Hardin 6 years ago from Las Vegas, NV

      Congratulations on LOTD. I had never heard of Klippel Trenaunay Weber Syndrome before this. Thank you for sharing this unique condition.

    • GonnaFly profile image

      Jeanette 6 years ago from Australia

      Thanks for educating us. I had never heard of Klippel Trenaunay Weber Syndrome before. Congrat on LotD.

    • Commandrix profile image

      Heidi 6 years ago from Benson, IL

      Hey congrats on LOTD. I've seen guys who might have had something this before but I never realized that there was a name for it. I've always just figured that, with some things, it's not necessarily a "disability." It's just something that makes you unique.

    • profile image

      anonymous 6 years ago

      Congratulations on Lens of the Day. This is a very interesting read. I also wanted to say that you have a great outlook on life. Your attitude is very inspiring!

    • profile image

      J-Stanley 6 years ago

      First, congratulations on your Lens of the Day status (very cool and well deserved). Secondly, I have never heard of this before, so thanks for providing readers with information. Best of luck...

    • profile image

      TheresaBesaw 6 years ago

      I love this lens that shows your spirit is bright. I think it is amazing that you share you story in such a humble way. Best of luck and maybe there are some good support programs out there for those who suffer from KTW. My Aunt suffered from a rare disease and the support groups we found were very helpful with everything. My cousins do a walk-a-thon every year to raise awareness and funds for her rare disease. Best wishes always

    • profile image

      sheedale 6 years ago

      Another great info for today. All thanks to you!!

    • Bercton1 profile image

      Bercton1 6 years ago

      Never heard of KTW before! Congratulations on LOTD!

    • profile image

      mrducksmrnot 6 years ago

      Thanks for sharing the information about KTW. I am aware of it because my first cousin has KTW. Thanks so much for sharing with the world. Everyone should be aware of this for sure. Congratulations on LoTD. And again, Thank You for the blessing of sharing this lens for the World to see.

    • jasminesphotogr profile image

      jasminesphotogr 6 years ago

      Wow, I've never heard of this before! This is a really great lens, and should be very eye opening for many people. Congrats on your LOTD!

    • nightbear lm profile image

      nightbear lm 6 years ago

      You are extraordinary, and you mature way of handling what some would have been devastated by, is a tribute to your character and an example to us all. Your lens is terrific. Blessed!

    • Kailua-KonaGirl profile image

      June Parker 6 years ago from New York

      Congrats on LOTD! Very interesting. I am so glad that you finally have a diagnosis for this affliction. My best friend at the time didn't, but that was so long ago.

    • profile image

      kbrown 6 years ago

      Congratulations on LOTD. Fascinating lens. Thanks for sharing. Keith

    • Franksterk profile image

      Frankie Kangas 6 years ago from California

      What an interesting and informative lens. I had never heard of Klippel Trenaunay Webber Syndrome. So, you can say you're one in 100,000. That's pretty unique. Thanks for sharing your story. Blessing and bear hugs, Frankster

    • DLeighAlexander profile image

      DLeighAlexander 6 years ago

      Good for you for focusing on the positive side of your struggle. I am glad it was not worse for you. Thank you for sharing your experience and Congratulations for lens of the day. Wishing you many blessings in your future.

    • TheVox1 profile image

      TheVox1 6 years ago

      Thank you for sharing your amazing story. I'm glad you didn't have to experience the worst that some do. It's an inspirational and informative story that I hope will get the attention to others who have KTS. Also, congrats on LOTD!

    • profile image

      JennySui 6 years ago

      Congrats on LOTD!

    • fotolady49 lm profile image

      fotolady49 lm 6 years ago

      Congratulations on LOTD! Very informative lens, thank you for sharing.

    • Kiwisoutback profile image

      Kiwisoutback 6 years ago from Massachusetts

      Congratulations on LOTD! Thanks for sharing about this syndrome and your experience with it. Otherwise, I would have never heard of it before.

    • sidther lm profile image

      sidther lm 6 years ago

      Congrats on LOTD! Glad you were so lucky to escape the worst scenarios and I love that you have such a great attitude about including klippel trenaunay webber syndrome as a part of what makes you you! Every experience, positive and negative shapes our personalities and it is always great to hear stories like yours.

    • MelissaRodgz profile image

      MelissaRodgz 6 years ago

      You were lucky. Thanks for sharing this about this disease. It helps people be more aware.

    • Ann Hinds profile image

      Ann Hinds 6 years ago from So Cal

      Thanks for sharing this. Each day we learn something new and although it is regrettable that this disease exists, it helps me to understand more about the people around me. Great lens, I can see why it is LOTD. Congratualtions

    • BunnyFabulous profile image

      BunnyFabulous 6 years ago from Central Florida

      Congrats on LOTD! Excellent lens.

    • NoobWriter LM profile image

      NoobWriter LM 6 years ago

      This is a great lens. Way to go.......

    • NoobWriter LM profile image

      NoobWriter LM 6 years ago

      This is a great lens. Way to go.......

    • squidoopets profile image

      Darcie French 6 years ago from Abbotsford, BC

      Very interesting, I'd never heard of this syndrome before, now I am educated. Many thanks.

    • vanidiana24 profile image

      vanidiana24 6 years ago

      Thanks, I've learned a lot from your story!

    • writerkath profile image

      writerkath 6 years ago

      Not only do I congratulate you on your LOTD, I also congratulate you on being so amazingly upbeat and inspirational! It's terrific that you put this lens out there - undoubtedly you are going to help a lot of parents as well as others who live with conditions that most people might not know about. You are absolutely wonderful! Hugs, Kath :)

    • mySuccess8 profile image

      mySuccess8 6 years ago

      Lens of the Day! Congrats! Glad to read about your positive attitude, which everyone should nuture.

    • akumar46 lm profile image

      akumar46 lm 6 years ago

      Thanks for sharing such information about this rare complication.

    • Diana Wenzel profile image

      Renaissance Woman 6 years ago from Colorado

      Thank you for sharing such important medical information that can help others. Even more, I appreciate your willingness to share your journey. Awareness is such a key to understanding and to being able to live fully. Congrats on LotD!

    • profile image

      WearArmor 6 years ago

      God bless you for sharing your story! Because of people like you, cures are found!

    • profile image

      jgelien 6 years ago

      Thank you for sharing your personal experience with this syndrome which is new to me and probably many others. You have a wonderful outlook on life and an engaging way of telling your story. I enjoyed your lens very much.

    • profile image

      anonymous 6 years ago

      Lens of The Day! Good for you.

    • jptanabe profile image

      Jennifer P Tanabe 6 years ago from Red Hook, NY

      Congrats on a well-deserved LotD. I had not heard of this syndrome before - thanks for sharing your story.

    • DuaneJ profile image

      DuaneJ 6 years ago

      Thanks for raising awareness around this and congrats for winning LOTD...

    • mbgphoto profile image

      Mary Beth Granger 6 years ago from O'Fallon, Missouri, USA

      Very interesting...thanks for telling your story. congrat on LOTD

    • profile image

      termit_bronx 6 years ago

      Very nice lens with full of great information! I've never heard of this syndrome before, but I think it would be wise, that the teachers or doctors would mention it. Congratulations on your LOTD! :)

    • profile image

      WeirdStuff 6 years ago

      Interesting, it's good to rise awareness about such issues!

      (and your lens received my 900th like :)

    • fenz28 lm profile image

      fenz28 lm 6 years ago

      The first time I heard about this. Enlightening. Thanks for sharing. And Congratulations :)

    • LadyCharlie profile image

      LadyCharlie 6 years ago

      Your lens is enlightening. Congratulations on LOD. Best Wishes

    • RuthCoffee profile image

      Ruth Coffee 6 years ago from Zionsville, Indiana

      I had never heard of Klippel Trenaunay Webber Sydrome. This was very educational. I'm glad you have a mild case of it. Congrats on lens of the day!

    • profile image

      bharathipriya 6 years ago

      Thanks for creating awareness through this wonderful lens.

    • Shoputopian profile image

      Karnel 6 years ago from Lower Mainland of BC

      Congrats on Lens of the day...

    • profile image

      learnfrenchontheinternet 6 years ago

      Great lens!

      My sister has the same issue :)

    • gottaloveit2 profile image

      gottaloveit2 6 years ago

      You've definitely earned lens of the day with this telling story. I'm sure you've helped a lot of people recognize this rare syndrome. Great job and glad you're fine!

    • whenaa profile image

      whenaa 6 years ago

      Thank you for sharing. I also have a rare congenital disease which I'm currently writing a lens on. It really puts it in perspective how lucky some people are to have what they've got.

    • profile image

      delawson734 6 years ago

      Are there any causes for KTW I can support?

    • profile image

      anonymous 6 years ago

      I enjoyed you story very much. Thanks for sharing.

    • profile image

      anonymous 6 years ago

      @anonymous: This is excellent, i though you were fantastic when you were talking about phlebotomy certification and at the same time i really enjoyed reading your lens as well.

    • profile image

      anonymous 6 years ago

      This is excellent, i though you were fantastic when you were talking about phlebotomy certification and at the same time i really enjoyed reading your lens as well.

    • spiritualll profile image

      spiritualll 6 years ago

      I have been fighting craziness for 5 years. I know how is to fight a disease.

      The anti-conscience,which occupies the biggest part of our brain and psyche, is very powerful and it managed to destroy a big part of my human conscience.

      Fortunately, I was helped by the unconscious mind, which possesses unimaginable healing powers. I think it can cure your disease, at least partially.

    • profile image

      anonymous 6 years ago

      A heath shoes are good for people to keep fit, Here we have offered our Shape Ups Skechers shoes, you can have a try when you are walking for a walk, our MBT Shoes Skechers UK shoes may make you more strengthen, on the other hand, this summer the he Skechers Shape Ups Sandals are also necessary for you.

    • profile image

      NidhiRajat 6 years ago

      great motivation in you... hats off to you and tons of congrats for your success!!!

    • LouisaDembul profile image

      LouisaDembul 6 years ago

      Very interesting, I had never heard of this before. You are brave to write about it, information is so important.

    • NoobWriter LM profile image

      NoobWriter LM 6 years ago

      Nice lens:)

    • JJNW profile image

      JJNW 6 years ago from USA

      You are brave and caring to share your story. I am sure it will help people. *** Blessed ***

    • flightofdestiny2 profile image
      Author

      flightofdestiny2 6 years ago

      @bechand: No I do not have splints. I don't consider it a deformity in any way. It is a part of who I am and does not interfere with my daily life in any way. I thank you for your concern, but I'm not interested in fixing what isn't broken

    • profile image

      anonymous 6 years ago

      Jasmine

      You forgot to mention what affect it can have on women. Since KTW affects soft tissue, it could have left you unable to have a child. Thank God that didn't happen and we have Faith Ann to prove it! I also found it amazing that your doctor at K.I. Sawyer AFB in Michigan knew about KTW and had actually seen three other children with the syndrome.

      Love Dad

    • DuaneJ profile image

      DuaneJ 6 years ago

      This is an inspirational lens...thanks for sharing your story with us!

    • bechand profile image

      bechand 6 years ago

      Hi - My name is Kathy and I am an occupational therapist. My comment would be a question to ask if you have splints for your fingers. If not, please contact me back as I can give you a couple suggestions that are not too invasive, but if you do not have them, you will find that your deformities will only get worse ...

    • flightofdestiny2 profile image
      Author

      flightofdestiny2 6 years ago

      My life is incredible. Not only am I lucky, I'm blessed!

    • profile image

      AlleyCatLane 6 years ago

      Sorry to hear of your condition, but I love your positive attitude. Thanks for writing an informative lens. Hopefully others will be helped by your willingness to write such a personal lens.

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