You are here

General Discussion

If you'd like to start a forum topic about something general - you can do it here.

Looking to meet other people with bilateral PFFD

I am Ella, I live in Brighton in the UK, and I am a documentary film director who has bilateral PFFD. I am making a film about my experience and would love to connect with other Adults who have the same classification as myself, which is Paley Type 3B Bilaterally, and Aitken Classification D. It would be fantastic to meet people who have and haven’t had surgery. I see that there are 2 women who have written on this site; Kelly Laura who is also in the UK, and also Steph, who both sound similar to myself.

89th birthday

I just turned 89 and am looking forward to my 90th.

History of PFFD

Does anyone know when the first case of PFFD was discovered?

88th Birthday

I just celebrated my 88th birthday. I am still quite active. I am permanently wheelchair bound but as long as I can still drive and get around that is all that counts!!

Amputation

Hi, seeking advice. My daughter has PFFD. We chose not to amputate her foot, deciding that she could make that choice on her own. She is 13 now, and is considering it...I'm am wondering if anyone has experience with this and can give insight on what to expect in regard to recovery, phantom pain, mobility, etc. thank you!

Relationships

Hello people,

Insurance Hoops to jump through

Hello, I just found this group yesterday. My daughter was born in 1991 in St. Louis with the most severe level of PFFD, so she has, roughly speaking, an above-the-knee prosthetic. We were very very happy Shriners patients until she aged out of the system. We now live central Illinois and cannot find any prosthetist nearby that can help with a new leg. We found someone at the Rehab Institute in Chicago who is wonderful and very experienced. Unfortunately, our insurance denied our request for a new leg because the doctor is not in our area of service.

Amputation of the foot or Rotionplasty??

I decided to write down a question message because of my dilemma a treatment of PFFD.
We live in United Kingdom and have little boy. Eric was born in August 2011 with PFFD.
English doctors in Sheffield think Syme amputating or Van Nes Rotationplasty would be the way to
do. Which we were told this before so it wasn't a shock.

Excessively high CRP levels

Has anyone noticed a correlation between high CRP levels and PFFD. My level has been astronomical, but the doctor has run many tests and found nothing to explain them. She has now decided that perhaps they are related to my birth defect. Since CRP is given off by the liver to offset high levels of inflammation in your body, her theory is that the defect has created an ongoing state of inflammation that my liver is constantly battling. CRP levels are also used to determine heart disease, etc., the results can be misleading and frightening. I haven't found any research conducted on this.

Online PFFD chat with Dr. Standard June 20

Dr. Standard, Head of Pediatric Orthopedics at the International Center for Limb Lengthening at the Rubin Institute, is hosting an online chat on June 20 at 8 PM EDT.

For more information, including the password for the chat room, please email icll@lifebridgehealth.org .

Pages

Subscribe to RSS - General Discussion