Personal Stories

Well, I've been a member for about a year and I think I'm finally going to have my surgery. I really would like to do lengthening on my legs but I think it well be to hard. See both of my legs are short and my right is shorter by four inches. This summer I really wanted to have the surgery but my mom is making all the decisons. She would like for me to have it after I graduate which is next May. And also right now I don't have any insurance becasue my Medicad was taking away. It delayed my ear repar surgery for my deformed ear.

My name is Lindsay and i was born with PFFD and it has been the hardest thing on me. I finally want to talk about it. I have had 34 surgeries on my Left femur/hip/knee. I was the first kid to try the new internal lengthening rod which was tough. I just want to know what path everyone else is taking..

Hi Everyone! :)
My name is Megan Miner. I am 19 years old and i have PFFD, but my twin sister Katie doesn't. I have no idea what class i am, but i definitely know i have PFFD! lol! My mom has always been very supportive and always treated me and my sister as equals. I was raised just like any other kid. My mom is pretty much my hero. Im a VERY outgoing person who LOVES to have fun with all my friends. Everywhere i go.. people know me, call out my name and give out hugs!
I can walk... but i have a wheelchair only for school, the mall, and long distances.

Hi,
I just read about this article today in Sheila's post, and now just mentioned in Angela's, and was wondering if there was any online method of viewing this as i'm in the UK and i don't think we get that magazine here?
It might be that a kind person may be able to scan it an email me it maybe. Be interesting to see it.
I'm sure such an article brings national coverage of a condition that i'm sure most people still haven't heard of.

Thanks

Dave Bailey

I was just reading the People Magazine story on Lilly Stiernagle and Maya Albert and was very struck in the similarity to their syndrome and my daughter's. The geneticits called her syndrome Fomoral Facial Syndrome but it shares so many simiarities. This syndrome also has shortened or absent femurs but can also include cleft palate and other maxofacial deformities. My daughter's femurs are very shortened and bowed and she also had coxa vera of the hips where the head of the femurs enter the hip socket at the wrong angle.

My sister just sent me the article in the July 21 issue of People Magazine regarding Maya Albert and Lilly Stiernagle. I am 56 years old and have lived with PFFD my entire life -- when I was born the doctors told my parents I would not live, then that I would not walk and the best thing that my parents could do was to put me in an institution and forget about me. Obviously they did not! I have been married for 30 years, have a 24 year old son who is 6' 4" tall and I use NO prosthetics at all--other than a wheelchair for "long" jaunts -- like to a Super WalMart or the mall.

my son michael has unilateral pffd and has had lengthening with Dr Paley his leg has been lengthened 20cms but we still have a long way to go michael is almost 10

This is Sonia , 37 years old . l was born with PFFD and l have lived very happy and success , I am a computer engineer and happy with my job , l like to dance to treat ppl well and to be positive and optimistic. 3 years ago l married to a man is living in Canada, unfortunatley the immigration of Canada didnt accept my application to join my husband , and its because of the fact that he is a gay . and he didnt say me the truth before marriage and he cheated me .

34 years ago I was born with BPFFD level D. The Dr's informed my parents that I would never walk. However no one ever told me that. So I learned to walk in my own time. After learning to walk, I learned to run, rollerskate, ski, ride a bike, be a cheerleader, play volleyball, drive a car....etc. Why did I start out my very first entry on the website listing what I was or am ABLE to do?

My name is Maria Wallace. I am the proud mother of a 4yr. old with PFFD. Her name is Nina and she is a Uni. with a prosthetic. Nina is also a twin. She's stong and determined. Although she was born with PFFD, it hasn't been an issue. I've had it easy.She is a wonderful child. Never complains. A few weeks ago, for the first time, she told me she wanted a real leg. Talk about a wake-up call. She wants to ride a bike so bad. So, here I am. This isn't about her riding a bike. I know we'll find a way. This is about support. This is about us knowing we aren't alone. THANK YOU SO MUCH.