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Hi! I’m 57 years old, woman with PFFP class 2. I also have a shortened 3rd nerve and muscle in my right eye, so I have no depth-perception. In the 1960’s, I went to Shriner’s Hospital for Crippled Children and my condition was called ‘congenital absence of femurs‘ . Until I was 13, the only treatment I had was ‘observation‘ every three months. IE walking up and down the hall while doctors watched me. I was shown my X-rays but didn’t know what the big deal was. When I was 12, I was fitted for artificial legs called ‘pylons’. I’m sure you older ones know what I mean. I HATED them and went through hell using them! The ground had to be perfectly level and many pubic sidewalks weren‘t. I never looked at myself in the mirror because I didn’t like what I see, thanks to those doctors at Shriner’s who wanted me make me ’perfect’ and ’accepted’ by wearing those horrible braces. I put my family through hell because I didn’t accept them like the docs told them I would. The docs didn’t ask ME if I wanted them. My parents went through their own private hell, thinking PFFD was somehow ‘their fault‘.
I now live independently in public housing, in a non ADA apartment. Growing up in my family’s home, I’d climb up on a chair to reach something. Being the only short one in the family prepared me for being independent. I now have a stick with two hooks, to reach things on higher shelves. My apartment kitchen is arranged so I have things I use daily are on lower shelves and/or cabinets, and I’ve made friends who are willing to give me a hand if needed. I buy walking shorts off the rack to wear year round, as most are the right length. For me, the hardest part of PFFD is weight control. I used to think weight doesn’t matter because I don’t fit on any height/weight/BMI chart --but it DOES. I’m proud to say I’ve now lost weight because of a better diet and walking - the only exercise I can do. I have now an incredibly wonderful GP. On my first visit. the first thing my G.P said to me was “I was up all night reading your file. I don’t understand PFFD, so when you get a cold, I’ll treat you as an adult with a cold If you break your arm, I’ll treat you as an adult with a broken arm” I could‘ve hugged him! He referred me to other docs as needed who likewise open\ treat me as a person.

To all the young people with PFFD, I hope you find doctors who are open- minded enough to accept your opinions and choices of whether or not to use braces, have surgery, etc. If you wear those braces, I wish you the very, very best. Some people can handle them. I cannot. I hope your family accepts and loves you as you are.