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Adult with PFFD

I am a twenty eight year old female with bilateral PFFD. I'm interested in hearing from other adults with this condition.


Hi, my name is Nick, and I'm 37/m with PFFD. Nice to meet you ;)

you can email me if you like. I'll try an send you a private message with my address

well I can't seem to find a way to do so, so here it is - Nick @ black hagen - just remove all the spaces. (trying to prevent spambots from finding me!)

1) Click on a user's name
2) Click on "send private message"

I know the users name, but can't find anyplace where it's clickable. the only place I see the username leads me to the blog. I haven't been able to find a member list, and when I go to the extended search everything I click gives me an access denied page. Am I missing something?

With the new site upgrade I needed to add that permission back in. I have done so and you should see a person's name appear in blue.

Hi my name is Brandy, My husband and I were blessed with a little girl in october of 2004 with bi-lateral pffd. as it is such a rare condition I have not been able to speak with anybody else. I would really appreciate it if you could tell me anything about growing up with pffd. looking forward to hearing from you.

my private email address is


I am 31 years old. I have PFFD (right leg), aitkens B-C. I live in Norway, I am married, and I have two adorable children aged 4 and 2. It is no more than a year ago I realized that I had a handicap. Until then it had been a "no-subject". It is very interesting to see that there are many of us, I have always belived I was the only one in the world with this thing... I have always wanted to dance ballet, thats the only thing I havent been able to do, but I have been horseriding (had my own horses), aerobics (when I was younger and before my pregnancys :-) ), running, playing football, volleyball and you name it. I would love to hear from you and others!

Hi Mona,

My name is Rachele and my daughter Shelby was born 2-19-05 with pffd. She will be treated as an above knee amputee. I guess I have all of the fears, concerns and questions any other parent would have.

Do you wear a prosthetic? How was it for you as a child growing up, especially other kids' reactions? As you grew up was it an issue with boys? Any other advice or thought would be greatly appreciated.

Thank you,

Dear Rachele,

I am a 51 yr old woman with unilateral PFFD. I wear a left AK prosthetic. I am the oldest of 5 children. I am living a perfectly normal, very active (I continue to bicycle, alpine ski, kayak, hike, you name it!)life. I am married with 3 almost grown children - which I carried to term while wearing my prosthesis throughout and delivered vaginally.

The single most important thing you can do for your daughter is to believe that she is a perfectly normal person who just happens to wear an artificial leg.(Don't laugh, try to think of the artificial leg the same way you would think of a pair of glasses. She needs the leg to walk, just as a person who wears glasses needs them to see properly.) Whatever she wants to try to do physically, she should be encouraged to try to do. Chances are she will figure out a way to do it. Remember that dirt and skinned knees (and scratched prosthetics) are all a part of childhood, that falling down is normal when you are learning to walk, that she is beautiful (this will be especially important when she hits those awful teen years).

As to other kids reactions (and this is true for adults as well) SHE is in control of their reactions to her. How she presents herself to them will determine their reaction. If she considers herself normal, if she behaves normally, other people will view her as such. Boys will be no more of an issue for her than they will be for any other teenager. It may take them a little longer to appreciate her (since teen boys, like teen girls, are not necessarily dating someone because they like them, but because of the status they confer). I was teased as a girl because I was SMART, not because I wore an artificial leg.By the time I was out of high school and in college, the boys who were put off by my leg weren't worth worrying about, because there were plenty of others who were interested in me.

Will she have to be patient with other kids when each new kid asks the same question for the bazillionth time, "What's wrong with your leg?" "Why do you wear that?" ? Yes! But she will learn, as we all do, how to field those questions with grace.

It is not true that it is "easier" for someone born with a disability to adapt to it. What is true is that they learn to deal with it slowly, as they mature and become aware of themselves. This is where your attitude becomes so important.

Your job as a parent is the same as any other parent, to raise a responsible, intelligent, polite, hard working(fill in the attributes that are important to you) individual. You must not let the PFFD rule her life - it is only one aspect of who she is, of what she has to contribute to the world. Do not treat her any differently from any other children you may have - do not let her PFFD change or alter your relationship with your husband, do not let her PFFD change the structure of the family you have or want to have. (my parents had 4 perfectly healthy normal children after me).

Oh yes, did you know that all 3 of the one-legged women on the US Disabled Ski team have PFFD? (Unfortunately, I am not one of them). Check out Disabled Sports USA, if you want to find out more about what people with physical disabilities are capable of achieving athletically.

Please feel free to contact me privately, Cindy

Dear Cindy,

I am a 25 year old woman with unilateral pffd and you are the first social contact I have attempted to make as regards my condition. I am originally from Oklahoma City and am now living in southern Illinois whre I attend graduate school. I am planning to get married next year and am also hoping to start a family within the next three years or so. I was excited to read your post because you sound like someone I might have a lot in common with. I too wear an AK prosthesis and have always been very athletic. I was a competitive gymnast for a number of years and have tried a number of other sports including skiing, basketball, baseball, weight lifting, swimming, and biking. At the moment, I'm trying to get into biking as a serious sport. I am particularly curious about how your pregnancies went. I am worried about the mechanics of carrying a pregnancy and am not sure who to talk to about it. If you have any advice, I'd love to hear it.


Sarah Woolwine

Hi! I am 27 and have PFFD. I was born pretty much with out a femur. I wear a full lengh prothesis and get around just fine. Not much gets me down and I do pretty much what I want.I am interested in talking with others that have a true PFFD. Since it is rare, and living in a small town, I have never had the opperuntity to talk with others and compare notes. I'd love to chat to see how things are going for you. Do you have a full length prothesis?

Greetings! I just learned of this website today. I have known for years that I had a left hip problem, but did realize that is was PFFD until I was reviewing an old doctor chart from a visit over 10 years ago. I always thought it just formed incorrrectly and thought I was the only person on earth with this problem :) Just wondering your experience and if you received any replies to your posting. Thanks so much and take care--Susan

Hi there! My daughter, Sami, has PFFD (class D)...I love hearing from adults with PFFD (especially women). Thank you so much. I have chatted with Caroline (have you heard from her yet?)...she's been so helpful. My goal, as a mom, is to no allow this to be a handicapp for Sami and to build her inner strength.

What kind of "treatment" have you gone through? Sami just turned 1 and wears a prothesis.

Thank you!