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I Have Popliteal Pterygium Syndrome

Popliteal Pterygium Syndrome & My Family

By: rgibson5
Written on December 18th, 2008

I am a 29 year old wife, mom, & step mom. I have a wonderful step son & 2 beautiful daughters. This syndrome is very rare however it is hereditary. My husband, 13yr old step son & my 4 yr old daughter all have this syndrome. My step son has had over 20 surgeries & my daughter has had 8 surgeries & still has more to go.  I am trying to reach out to other familes that might also have this syndrome to see what treatments they may have used - if they are the same or different than what we have done.

By: rgibson5
Age: 26-30
659 people have read this story

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6 responses
  • khinton
    khinton

    My son is 6 months old and was born with PPS. No one in our family has ever shown signs of the syndrome, the only thing we know is a distant relative was born with a cleft palette. His orthopedic doctor wants to do surgery on his leg next month and IM terrified. Also running into finding a doctor who knows about this syndrome.

    Oct 12, 2012
    1 like
  • cyeater1
    cyeater1

    I am a 29 year old female who has PPS. I also have a four year old son with this syndrome. Like you we have had many surgeries. I understand the struggles many of you face. You are not alone. I am interested in communicating with others who face the same day to day struggles as I have.

    Apr 22, 2010
    1 like
  • AlihasPPS
    AlihasPPS

    The popliteal web is typically the most difficult orthopedic problem. This is our current problem now is to find an orthopedic doctor to perform a surgery to correct his left leg and not amputate his left leg. My son Ali is 4 year old needs surgery to correct his legs and I am NOT finding any doctor to do the surgery. He has had 34 surgeries to correct the physically problems of PPS. And will need many more…



    ***I AM LOOKING FOR OTHERS WITH PPS***

    May 12, 2009
    1 like
  • AlihasPPS
    AlihasPPS

    The popliteal web is typically the most difficult orthopedic problem. This is our current problem now is to find an orthopedic doctor to perform a surgery to correct his left leg and not amputate his left leg. My son Ali is 4 year old needs surgery to correct his legs and I am NOT finding any doctor to do the surgery. He has had 34 surgeries to correct the physically problems of PPS. And will need many more…



    ***I AM LOOKING FOR OTHERS WITH PPS***

    May 12, 2009
    1 like
  • AlihasPPS
    AlihasPPS

    The popliteal web is typically the most difficult orthopedic problem. This is our current problem now is to find an orthopedic doctor to perform a surgery to correct his left leg and not amputate his left leg. My son Ali is 4 year old needs surgery to correct his legs and I am NOT finding any doctor to do the surgery. He has had 34 surgeries to correct the physically problems of PPS. And will need many more…



    ***I AM LOOKING FOR OTHERS WITH PPS***

    May 12, 2009
    1 like
  • all6ie
    all6ie

    Hi,



    Unfortunately I cant give you much help much in the form of treatments, because mainly I only ever had surgeries as well, along with intense physio-therapy. Im now turning 21 and was born with the syndrome, inherited from my mom. I had my last surgery in grade 2. Im not sure what the total count is on my legs but I think its around 8-10. (then obviously others for cleft palate and such).



    Personally I feel as if there is no real "cure" its more preventing it from getting any worse, although I am no longer allowed to have surgeries, because there is about a 75% chance I will go paralyzed.



    Mainly I just wanted to sympathize. I guess you could say im through the majority of it, and now its more just living with it. Its not as bad as it appears it will be.



    I hope everything works out for you and your children!

    Jan 18, 2009
    1 like