PFFD VSG2 - General Discussion

This site pffd.org

rar — Sun, 23 Mar 2025 02:14:58 +0000

PFFD:

Looking to meet other people with bilateral PFFD

Ella — Thu, 09 Jul 2020 10:42:53 +0000

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. I am keen to make contact with them, although they don’t seem to have been active since 2012, so any guidance in how to connect would be very appreciated. I am a member of the Facebook PFFD page so you can see my posts and photos on there.

PFFD:

General Discussion

89th birthday

pibit — Thu, 23 Jan 2020 22:40:40 +0000

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

PFFD:

General Discussion

History of PFFD

maryjane280 — Sun, 03 Mar 2019 20:44:13 +0000

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

PFFD:

General Discussion

88th Birthday

pibit — Thu, 24 Jan 2019 19:23:18 +0000

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!!

PFFD:

General Discussion

Amputation

LibbiC — Fri, 02 Jun 2017 00:32:18 +0000

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!

PFFD:

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Relationships

jacqueline tembo — Fri, 03 Jun 2016 22:08:40 +0000

Hello people,
It's been a while I hope everyone is doing fine and living fulfilled with life. Am 23 years now my life with PFFD is a journey filled with many turns never the less am happy where I am . Am now a certified Prosthetist/ orthotist making artificial limbs for people and motivating them I couldn't ask for more fulfillment. My love life isn't so lively I just can't seem to find someone who sincerely likes me enough to date. Most guys I meet just seem to want sex and nothing more. Am really struggling will I find love? Will I get married and have a family? Somebody encourage me!!!

PFFD:

General Discussion

Insurance Hoops to jump through

debaronson — Thu, 09 Jan 2014 19:05:48 +0000

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. Although the local prosthetic shops were unable to help us they are also not willing to write a letter to that effect - they'd like to use my daughter as a guinea pig to learn about helping a PFFD person.

Anyway, we're trying to appeal the decision and we cannot change insurance plans for another year. If anyone has any experience with an appeal and trying to convince the health insurnace decision makers that PFFD is rare enough that you can't go just anywhere I would really appreciate hearing from you.

Thanks!
Deb

PFFD:

General Discussion

Amputation of the foot or Rotionplasty??

Betty Ciebien — Thu, 29 Aug 2013 08:06:12 +0000

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.
We've send a email to Dr Dror Paley in Florida and he said, that the best option will be Paley-Brown Rotationplasty but unfortunately for us, this option is too expensive. So question I have of parents who went with Rotationplasty what's the difference between Van Nes and Paley-Brown Ratationplasty.
Anyone who has Van Nes done in England? I would like to know what's functionality (at every time) of people with
amputation of the food and Ratationplasty. So much to think about just wanted to hear a little from parents who have already done it..
Sorry it's so long!
betty.ciebien@gmail.com

PFFD:

General Discussion

Excessively high CRP levels

hopalong6 — Mon, 29 Jul 2013 15:44:49 +0000

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. Thought someone else might have run into the same condition.

PFFD:

General Discussion