Klippel-Trenaunay-Weber Syndrome Support Group

Klippel Trenaunay Weber syndrome (KTWS) is a medical condition in which blood vessels fail to form properly. Although the cause and processes surrounding KTWS are poorly understood, the disease is diagnosed by the presence of at least two of the symptoms on a single extremity: A distinctive port-wine stain with sharp borders, Varicose veins, Hypertrophy of bony and soft tissues that may lead to local gigantism.

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  • deleted_user

    shoes- any advice?

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    My son was diagnosed with KTWS at birth and is soon turning a year old. He is beginning to cruise and I know walking is soon approavhung! I am having difficulty finding shoes for him as his right leg is involved and therefore larger. Does anyone have a suggestion or recommendation?
  • sassymom77

    School/IEP

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    Need help writing an IEP for my daughter going into the public school system. The school system has no knowledge of KTW and do not see any issue now with my child. She is 6 and affected in all 4 limbs. Is speckled with hemangiomas all across her body, head to toe. She has been in OT and PT privately for over a year and attending a private school. The next school year she must attend a public...
  • sassymom77

    School/IEP help

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    Need help writing an IEP for my daughter going into the public school system. The school system has no knowledge of KTW and do not see any issue now with my child. She is 6 and affected in all 4 limbs. Is speckled with hemangiomas all across her body, head to toe. She has been in OT and PT privately for over a year and attending a private school. The next school year she must attend a public...
  • My husband was dianosed with KTS at birth he is now 31 years old and has suffered so much because of this. we have searched far and wide for doctors who could help him but with no luck he has just had to live with this syndrome. He has port wine all over the left side of his body from head to toe. the etire left side of his body is bigger than his right side and he suffers with so much pain from...
  • deleted_user

    KTWS, experiences

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    Hello,Im a 27 year old girl from Europe and I would love to talk to people who have KTWS. I was diagnosed since my birth but in my country there is not that much knowledge about the syndrome. I would love to talk to other people who has KTWS and how they deal with it in daily life, how they deal with the pains and if they had any helpful surgery.I have never seen KTWS as a great obstacle in my...
  • ayla67

    new on site

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    Hi,I just wanted to introduce myself. I notice there haven't been any posts for a while on this topic. I am 47 and I have KTW in my right leg up to my groin and have some internal organ involvement as well. I just thought maybe if there are still some of you out there we could compare notes, share ideas?Ayla
  • deleted_user

    tattoos for kts

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    I want to get a tattoo for my brother with kts, does anyone have any cool ideas?
  • Hi, I'm Lauri and new here. I have a 30 y/o son with KTW primarily affecting his lower extremities. He had two surgeries in the early 80's at the University Of Michigan with Dr. Markley, a plastic surgeon, do do ray amputations of 5 toes and debulking. His care was then transfered to Dr. DeVito, an orthopedic doctor who removed growth plates and performed reconstructive surgery. ...
  • deleted_user

    KTWS

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    My daughter is 22 years old and was diagnosed at birth with KTW. Doctors told us to wait and see want happens,she had port wine stains over half of her trunk and hydrophy on her left side from her toes to her head. I didn't want to do that so I approached the treatment aggressively. I finally found doctors in numerous hospitals that would treat her. since then she has had over 60 procedures from...
  • My mother is 76 and has KTS. Recently the pain has increased in her hip and knee but she is not a candidate for surgery due to risks with KTS patients. Has tried cortisone shots to both areas but they were not effective. Seeking any other options out there. Apparently also not a candidate for synvisk or rooster comb injections. Thanks for any help.
  • deleted_user

    Physical Abuse

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    I have a 3 year old daughter, at 8 months she was diagnosed with Klippel-Trenaunay-Weber Syndrome. During my pregnancy I was physically abused numerous times. I am know going through a custody battle fighting for parental rights to be terminated. He has never seen my daughter. I was wondering if anyone knew if physical abuse could potentially cause this syndrome. We see a specialist yearly for...
  • deleted_user

    Personal Stories

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    I was diagnosed with KTW when I was 4. I have recently written an article about my own life with KTW and want to share with others who are going through the same thing. The site is http://www.squidoo.com/klippel-trenaunay-webber-syndrome-my-story
  • I need help to find a Dr. in Atlanta or in the metro Atlanta area who knows about KT. None of my Dr's seem to know anything about it. I mean they can look at my leg, and know that it's vascular but that is the extent of it. Any help would be greatly appreciated. Thanks.
  • deleted_user

    hopefully helpful

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    I know that there are not many of us in the world and information is very hard to come by within the actual medical community itself, but there is hope. The mayo clinic in rochester minnesota, holds the anwser to our prayers with dr. david driscoll. I have had personal phone conversations with Dr. Driscoll about my kt concerns and he has never even seen me. Dr. Driscoll is a pediatric...
  • deleted_user

    KTS DR.

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    could anyone recommend a good KTS DR. near east Tennessee ?