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sarahJane's blog

Sarah's Story

I'm a 26 year old woman from Oklahoma City with unilateral class A PFFD in my right leg. I had a Symes amputation and bone fusion when I was 14 months old. I am now working on my Ph.D in philosophy at Southern Illinois University in Carbondale and wearing an above-the-knee prosthetic with a very basic knee joint and foot and a fairly involved cosmetic cover. I am very physically active--my preferred activities being cycling, swimming, weight lifting, and hiking. With the exception of hiking, I do most of my activities without my prosthesis and so my main concerns with it are limited to comfortable walking, adeqaute cosmesis, and as natural a gait as possible. I would love to experiment with an athletic leg but unfortunately do not have the kind of insurance plan that would allow me to obtain one and probably won't for some time! But, I'm satisfied with things as they are now. I grew up in a fairly middle class family; my parents got divorced when I was a year old and my mom raised me for the most part. I was always lucky enough to have access to good prosthetists and to always have a prosthesis that fit. Everyone in my family has always been supportive, but my mom did choose to handle the course of my treatment and the inevitable personal difficulties that arose for both us during my childhood on her own. She did an amazing job; I was never discouraged from pursuing any activity that interested me, and while I was sometimes discouraged by the limitations resulting from my disability, I was always encouraged to push my physical capabilities to their limit. I played softball and basketball as a child but the only sport I ever became serious about was gymanstics, in which I was competitive for years. Any parent of a child with pffd should take note: it really is best not to set limits on your child's physical activity--even if you think that your child is interested in a potentially dangerous activity-- such as gymnastics, tree climbing, pole shimmying, etc! Let your pffd child test his/her limits. At the same time, do not simply pretend that he/she does not have a disability. Honestly address the fact that there are some things that are difficult and/or impossible with pffd, and that while pffd is far from being the end of the world, it is still a serious and difficult disability to deal with... While I was never teased in school for having one leg, my adolescent years were certainly difficult. I could not help but be self-conscious to the point of pain about my condition and was at times deeply depressed. However, I still tried the things that I wanted to do and was generally very much rewarded for my efforts. I attended a magnet school for gifted and talented children and was very competitive in my academic work. Also, while I was generally very worried that boys and men would not want to date me because of my leg, I always had a boyfriend in high school. And I always went to the prom! I was also lucky enough to have good friends--some of whom I am still close to. These patterns continued as I began attending college, and now, in graduate school I am pursuing a course of study that is deeply meaningful to me and that I love. I am engaged to a wonderful young man who is also in my program here, though we have no immediate plans for a wedding. I do not know whether or not we will have children, but I have become curious about the experiences of other pffd women who have gone through pregnancy and childbirth, and what their experiences have been as mothers. And of course, I am intersted in the experiences of all people who have pffd. Feel free to contact me with questions, stories, etc. I don't currently have any friends with pffd and I'm finally eager to meet some!

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