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Klippel Trenaunay Weber Syndrome: My Story

Updated on December 15, 2014

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

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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

EEEWWWW THAT'S SO GROSS!!! Dude you have to see this!

EEEWWWW THAT'S SO GROSS!!! Dude you have to see this!

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    • Sue 2 years ago

      I have KTS affecting my left leg quite severely, extremely painful and ugly :( I also suffered a blood clot in my lung due to the KTS and I am now on blood thinning treatment for ever. I would recommend all KTS sufferers to be aware of Deep vein thrombosis and pulmonary embolism as this can occur in KTS and is extremely life threatening.

    • Sue 2 years ago

      I have KTS affecting my left leg quite severely, extremely painful and ugly :( I also suffered a blood clot in my lung due to the KTS and I am now on blood thinning treatment for ever. I would recommend all KTS sufferers to be aware of Deep vein thrombosis and pulmonary embolism as this can occur in KTS and is extremely life threatening.

    • JoleneBelmain 5 years ago

      It just made me all eerie inside and out... that kind of stuff gives me the willies on a good day.

    • CCDixon 5 years ago

      It looks painful!!

    • CalamariFritti 5 years ago

      I had a finger that did that once after a fall... but I'm not double jointed. Brings back bad memories...

    • Ann Hinds 5 years ago from So Cal

      I am also squeamish but I am totally impressed, I always wanted to be double-jointed.

    • Peggy Hazelwood 5 years ago from Desert Southwest, U.S.A.

      I'm squeamish. It sort of creeps me out to see people contorting their bodies. Sort of fascinating too, of course! Great lens!!

    OMG THAT IT AWESOME!!! Do it again... wait...dude come here you have to see this too!

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      • hoor 2 months ago

        My baby hoor has the problem at all one side of body can u please tell some information my English is not good I m much worried can u help me please my baby girl age is 2.50 years

      • L. Olson 3 years ago from Northern Arizona

        wow..I have never heard of this...glad you wrote about it and have such a good attitude. I hope any other people with this will read it to know they are not alone!

      • anonymous 3 years ago

        You used to baby-sit me at KISawyer. I remember this being mentioned, but I never knew the details -- it's cool to read about how well you've done and the things you've learned. :)

      • anonymous 4 years ago

        My daughter has KTS and she was diagnosed with hypermobility syndrome. Which is pretty much the same as double jointedness. When I keep her legs together and turn her torso, she can turn quite a bit more than the average person. I'm wondering if you have hypermobility syndrome too, and if it is a part of KTS.

      • anonymous 4 years ago

        I am 44 and was diagnosed with KT in 1994. My entire right side is longer/larger than my left. I also have an AVM that was found on my spine recently which means that it could be PW. I am glad you are posting about this, I also have Lymph edema which is only on my right side. Please be aware that the lymph system can be involved. Have a great day

      • anonymous 5 years ago

        Hi, my son is affected by KTS in exactly the same way you are (minus the double jointedness) It effects his right arm from below the elbow and the last three fingers of his right hand. His discrepancy in length between the left and the right is almost exact to yours. He is 15 now and I was wondering if your affected limb has stopped growing and if so when did it stop. Thanks for your article. I usually can only find cases of KTS affecting legs.

      • anonymous 5 years ago

        I also suffer ktws on my right leg. Im looking for help or treatment. Contact me at tweetiedizon@yahoo.com thanks

      • anonymous 5 years ago

        i suffer from the same disease in my right arm as well it seems to have a lot of different affects on different people if you would like to contact me my email is s.k.u.l.l.b.o.y@live.com im kinda looking for help so any information would help a lot currently my arm looks a lot different then yours the vains ae starting to do S's if that makes sense at all lol and the largest vain seems to be in my armpit its about the size of a toonie/looney. interesting story tho i don't really know anyone else with this

      • staymor 5 years ago

        Pretty interesting, never heard of this.

      • Surferstorm 5 years ago

        I can bend my thumb behind my hand at 90 degrees and people get freaked out at that. They have to see this it's an amazing icebreaker <3

      • Johanna Eisler 5 years ago

        Neither choice really matches my reaction. I thought, "It looks sort of like my daughter's hands - she's double-jointed but not to such a degree."

      • anonymous 5 years ago

        Never heard of this syndrome before; thanks for an informative lens.

      • anonymous 5 years ago

        Interesting! I am nearly 16 and a week ago got diagnosed with KTS (still getting to grips with it) but i was born with a birthmark also and it covers my left arm and both legs but thankfully i have no enlarged limbs and i have varicose veins. Like you when i was little my mum looked for an answer but doctors said its 'just a birthmark' it will go in time. I also supposedly have asthma but now am questioning it thinking theres problems with my lungs. But i am a very active person and before i knew i had KTS i played full contact rugby for three years and have been horse riding since i was 6! Not knowing it could of potentially killed me! I still have much more 2 learn as i only know the basics atm. Well done for hanging on in there :D hope all goes well.

      • anonymous 5 years ago

        Very interesting:) I also have KTWS and was seen at shriners and OHSU How fortunate to have such wonderful doctors! Thank you for sharing your story each one is so exciting to learn. For years I never knew so many people were going threw the similar health things as me.

      • anonymous 5 years ago

        Congrats on hanging in there. I'm a 29 year old male with KTS or Webers syndrome as well. At 18 I served in the Air Force and was discharged 4 1/2 years later because "I" or "they" never new what this disease was when I enlisted. My left hand is extremely larger than the right. Index and thumb to be exact. Also, the pork wine stain on the legs from the pelvis down and vericose veins in the legs. BTW, after I was discharged (because I was a liability to the Air Force and was deemed unfit to do my job), I went to work for another aviation company doing the same thing. Most of us lead normal lives and press on if we're fortunate. Hang in there and God speed!

      • anonymous 5 years ago

        My blessing towards you for staying positive and writing your feelings and story on this blog. You are stronger then you may thing at times.

      • Sunflower Susan 5 years ago

        Wow. LOL I look at all things as a gift in their own way. I think it's cool. No one else is just like you. :o)

      • yayas 5 years ago

        Until my son was almost into his teens, he could lay alla' his fingers flat on the backs of his hands, so I was not put-off by how double-jointed your hands are, actually. My son has other areas of double-jointed ability, as well.

      • anonymous 5 years ago

        I Have K-T on 25% of my leg, but my thumbs are double jointed??? Also may be a correlation of youthful appearance for people with K-T. I'm 54 but told like I look like in my early 40's????? Others have commented the same.

      • jimmiles 5 years ago

        Good for you for not hiding your unique challenge, but embracing it, and using it as a platform for helping others with it, or who just may want to let you know how proud they are of you!

        Keep up the great attitude!

      • anonymous 5 years ago

        I think you are very unique, you use your challenges to create a very positive outcome of life.

      • itsonlymejosh 5 years ago

        My pinky fingers on each hand are crooked and double jointed. I've freaked a few people out by bending them backwards.

      • Lee Hansen 5 years ago from Vermont

        Wow. Amazing flexibility ... makes me cringe to see the photos.

      • Mishael A Witty 5 years ago

        I have to admit. I'm fascinated! :-)

      • MoiraCrochetsPl 5 years ago

        You must be a mutant character from X-men! Cool!

      • NightMagic 5 years ago

        That's pretty incredible. I really don't see anything gross about it. Actually, I think it would be kind of neat to be able to do that.

      • KimGiancaterino 5 years ago

        It's pretty amazing ... so glad it doesn't hurt.

      • Natural_Skin_Care 5 years ago

        No one is perfect and we all have issues. Thank you for sharing and educating us.

      • bikerministry 5 years ago

        You are a very unique person. Sounds like you're making good out of your gifts.

      • Nancy Carol Brown Hardin 5 years ago from Las Vegas, NV

        I don't think it's gross, but I probably would ask you to do it again, because I'm such a curious person about anything I see. I think your attitude about "other people having worse problems," is a great one to have. My Mom always used to say, "I thought I was bad off because I had no shoes, until I saw a man who had no feet," meaning of course, there is always someone having a worse time of it.

      • sheedale 5 years ago

        It's a gift, I say. Amazing!

      • Reginald Reid 5 years ago

        It appears as if your hand is turned inside-out. Thanks for sharing your story.

      • mrducksmrnot 5 years ago

        My first cousin has this KTW and is double jointed much as you are. She is confined to a wheelchair and in a residential nursing home now due to a bad car accident some time ago. She loves to paint, do crossword puzzles and word search puzzles. Folks really don't know how this hinders the person with KTW unless they know of it first hand. Thanks for sharing.

      • nightbear lm 5 years ago

        The part that is awesome is that it doesn't hurt you. that is awesome. It is weird but interesting.

      • Loraine Brummer 5 years ago from Hartington, Nebraska

        I find it more interesting than gross, I've never heard of the syndome before although I have seen s few people who were double jointed. Is double-jointedness a degree of KTWS? Interesting topic and great job of writing about it.

      • June Parker 5 years ago from New York

        I had a girlfriend that could do that way back in elementary school in the 50's. It was just called "double jointed" then.

      • the-good-stuff 5 years ago

        Wow, I didn't know a hand could ever bend that way!

      • monistorz 5 years ago

        OMG

      • RMKK-Marlene 5 years ago

        My reaction was that it reminded me of my elementary school friend who was double jointed. I have no knowledge of her having KT Weber Syndrome, though. I hadn't heard of this syndrome before reading your lens. Thanks for the education and congrats on LOTD.

      • BunnyFabulous 5 years ago from Central Florida

        That is pretty cool. I'm glad you have a great attitude about what your body can do. Thanks for sharing :)

      • anonymous 5 years ago

        You hands are different, but you are wonderful and incredible for sharing with such positivity and style!

        Great lens and even greater you!

        Thanks for inspiring me!

        Yvonne Finn

      • gkygrl lm 5 years ago

        Bet you could play a great guitar. If it isn't painful or debilitating, use it to your advantage!

      • writerkath 5 years ago

        You are putting a huge smile on my face! You rock girl! :)

      • akumar46 lm 5 years ago

        Its unbelievable.

      • Renaissance Woman 5 years ago from Colorado

        I think it is amazing.

      • jgelien 5 years ago

        Fascinating. Do your toes do that as well?

      • Heather Burns 5 years ago from Wexford, Ireland

        I think it's cool. I'm double jointed in my arms, feet, toes, hands

      • termit_bronx 5 years ago

        I think that everyone have something special or different on their body. I don't find it gross or ugly, I think it's pretty cool what you can do with your hands, so DO IT AGAIN :D

      • anonymous 5 years ago

        I remember the first time you pointed out your difference to me when we met in High School. I actually had never really noticed until you showed me and must admit that it just wasn't something that stuck in my head when I think back to memories of us! It never bothered me and it also never brought unnecessary attention from me either! I'm glad you wrote the article though because I know it is difficult for people who have a rare condition to find others that have had experience with such things!

      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
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          flightofdestiny2 5 years ago

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

        • profile image

          jimmyworldstar 5 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 5 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 5 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 5 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.

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          anonymous 5 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 5 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 5 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 5 years ago

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

        • profile image

          seedplanter 5 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 5 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!

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          anonymous 5 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 5 years ago

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

        • flightofdestiny2 profile image
          Author

          flightofdestiny2 5 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 5 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
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          flightofdestiny2 5 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.

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          anonymous 5 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 5 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 5 years ago

          Wow, I'm without words. Blessed!

        • Ilonagarden profile image

          Ilona E 5 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 5 years ago

          nice lens

        • Faye Rutledge profile image

          Faye Rutledge 5 years ago from Concord VA

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

        • Lee Hansen profile image

          Lee Hansen 5 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 5 years ago

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

        • profile image

          anonymous 5 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 5 years ago

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

        • MoiraCrochetsPl profile image

          MoiraCrochetsPl 5 years ago

          Congratulations on your LOTD! I love your story!

        • MoiraCrochetsPl profile image

          MoiraCrochetsPl 5 years ago

          Congratulations on your LOTD! I love your story!

        • SheilaVine LM profile image

          SheilaVine LM 5 years ago

          thank for sharing

        • TheHealthGuy LM profile image

          TheHealthGuy LM 5 years ago from U.S.A.

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

        • PaulosDK profile image

          PaulosDK 5 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 5 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 5 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 5 years ago

          Thanks for sharing your story. Congratulations on LOTD!

        • pheonix76 profile image

          pheonix76 5 years ago from WNY

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

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          giunda 5 years ago

          @giunda: that same in angry birds

        • profile image

          giunda 5 years ago

          i like this ring

        • Nancy Hardin profile image

          Nancy Carol Brown Hardin 5 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 5 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 5 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 5 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 5 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 5 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 5 years ago

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

        • Bercton1 profile image

          Bercton1 5 years ago

          Never heard of KTW before! Congratulations on LOTD!

        • mrducksmrnot profile image

          mrducksmrnot 5 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 5 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 5 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 5 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 5 years ago

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

        • Franksterk profile image

          Frankie Kangas 5 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 5 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 5 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 5 years ago

          Congrats on LOTD!

        • fotolady49 lm profile image

          fotolady49 lm 5 years ago

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

        • Kiwisoutback profile image

          Kiwisoutback 5 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 5 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 5 years ago

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

        • Ann Hinds profile image

          Ann Hinds 5 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 5 years ago from Central Florida

          Congrats on LOTD! Excellent lens.

        • NoobWriter LM profile image

          NoobWriter LM 5 years ago

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

        • NoobWriter LM profile image

          NoobWriter LM 5 years ago

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

        • squidoopets profile image

          Darcie French 5 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 5 years ago

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

        • writerkath profile image

          writerkath 5 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 5 years ago

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

        • akumar46 lm profile image

          akumar46 lm 5 years ago

          Thanks for sharing such information about this rare complication.

        • Diana Wenzel profile image

          Renaissance Woman 5 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 5 years ago

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

        • profile image

          jgelien 5 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 5 years ago

          Lens of The Day! Good for you.

        • jptanabe profile image

          Jennifer P Tanabe 5 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 5 years ago

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

        • mbgphoto profile image

          Mary Beth Granger 5 years ago from O'Fallon, Missouri, USA

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

        • profile image

          termit_bronx 5 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 5 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 5 years ago

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

        • LadyCharlie profile image

          LadyCharlie 5 years ago

          Your lens is enlightening. Congratulations on LOD. Best Wishes

        • RuthCoffee profile image

          RuthCoffee 5 years ago

          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 5 years ago

          Thanks for creating awareness through this wonderful lens.

        • Shoputopian profile image

          Karnel 5 years ago from Lower Mainland of BC

          Congrats on Lens of the day...

        • profile image

          learnfrenchontheinternet 5 years ago

          Great lens!

          My sister has the same issue :)

        • gottaloveit2 profile image

          gottaloveit2 5 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 5 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 5 years ago

          Are there any causes for KTW I can support?

        • profile image

          anonymous 5 years ago

          I enjoyed you story very much. Thanks for sharing.

        • profile image

          anonymous 5 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 5 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 5 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 5 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 5 years ago

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

        • LouisaDembul profile image

          LouisaDembul 5 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.