I Have Parkes Weber Syndrome

A Parkes Weber Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Parkes Weber Syndrome. You're not alone. 17 People

    Hello: My daughter has Parkes Weber Syndrome.

    I'm wondering if anyone in this group is from Ontario?
    Momofgirl Momofgirl
    41-45, F
    2 Responses Feb 5, 2015

    Living With Parkes-weber Syndrome

    I am 52 years old and have Parkes-Weber Syndrome.... Unlike all the other stories I read, mine is in my left hand and of course I'm left handed. I was born with multiple red birthmarks of all shapes and sizes, the worst being my left hand. There was a time when I was a child that...
    DarleneE60 DarleneE60
    56-60
    1 Response Mar 27, 2013

    Story Of Seb

    My son has parkes webber syndrome he just turned 3 in November. We discovered that there was something wrong when he was 4 days old. We thought for a few years it was KTS but now we are sure it is Parkes Webber. He goes in for surgery next week and this will hopefully help with...
    storyofseb storyofseb
    31-35
    2 Responses Jan 25, 2013

    My Son Has Parkes Weber Syndrome

    My son will be 2 years old in August. He was born with Parkes Weber syndrome. I have never met anyone else with Parkes Weber syndrome or been able to find any support groups. I would love to connect with anyone else living with this condition. It is hard for other people in my...
    max112803 max112803
    31-35, F
    20 Responses Jul 19, 2012

    My 18 Year Old Daughter Also Has Parkes

    My daughter has Parkes-Weber, she is now 18. For the Last 17 years we thought it was KTW. She was rediagnosed last year. Shriners has been doing laser surgeries and she has been in the Primary Childrens and Pediatric hospital system her whole life. Now that she is an Adult, No...
    csi4n6 csi4n6
    41-45, F
    1 Response Aug 26, 2013

    Hello, My name is Mathilda Panzarella i have 17

    years old and i'm a french girl so excuse me for my bad english.. I sign up on this social network, because since a long time, i search a person who have PWS, in vain .. So this forum is precious for me. Like all of you, my desease was describe like a KLIPPEL THRENAUNAY or a...
    PanzarellaMathilda PanzarellaMathilda
    18-21, F
    1 Response Jan 30, 2015

    Daimyan is 9 and our journey began at his birth.

    He would like to ask everyone for support on a new support group on facebook. Search LUNAR to find it. Thank you
    LunarDayDay LunarDayDay
    41-45, M
    Jun 22, 2015

    My Daughter Has Parkes Weber Syndrome

    Hi everyone, so glad I found you all...my 17 year old daughter amiee has parkes weber syndrome, she was diagnosed at boston childrens hospital when she was 5, prior to that it was thought she had K-T-S. Amiee has the capillary blush, on her lower back, 100% coverage on buttocks...
    cheryldee7623 cheryldee7623
    56-60, F
    4 Responses Nov 7, 2013

    Do Not Get Sclerotherapy Treatments

    NOT SURE WHO THIS PERSON IS THAT KEEPS REFERRING EVERYONE TO HIS SITE BUT PLEASE IM BEGGING DO NOT GET SCLEROTHERAPY TREATMENTS IF YOU HAVE PARKES WEBER OR KTS. MY DAUGHTER GOT THIS TREATMENT ONCE BY A DERMATOLOGIST, AND IT WAS THE BIGGEST MISTAKE EVER. MADE HER VEINS POP OUT...
    csi4n6 csi4n6
    41-45, F
    4 Responses Aug 26, 2013

    Hi, I'm a 17 years old french canadian

    and I have Parkes Weber Syndrome. I'm also diagnosed with biventricular hypertrophy, dilatation of the left ventricule and a heart murmure. Like many of you i was first diagnosed with Klippel Trenaunay but the doctors at Boston's children's hospital corrected that and...
    isa19961 isa19961
    18-21, F
    Jan 2, 2014
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