I am a 25 year old woman with PFFD and I couldn't be happier. Despite what scoiety calls a handicap, I have lived a normal existance so far. I am so inspired by the stories posted on this site, I was excited about sharing mine. So, here goes:
I was born the oldest of what would become a sibship of two. My sister, Kelly, was born 18 months after I entered this world. While my sister is "normal" and I am not, we were raised to know that we are both the just the same. I believe with all of my heart that children are a product of their environment and I contribute my acceptance and life successes to my very supportive, naturally talented mother and father.
I had my foot amputated when I was 5 years old, I remember only one thing about the entire process; getting lots and lots of presents at the hospital! I was excited and ready to have surgery again!!! My parents shared with me a few years ago that they struggled with the idea of removing the foot vs. keeping the foot. I am thankful that they settled on the amputation. I played softball as a child, showed cows and pigs at the county fair, was a Camp Fire girl and loved to ride my ATV. My leg wasn't an issue in my life. I feel that having the amputation of the foot, I was able to move about just as easily as my peers.
In effort to keep this story short and not absorb too much of your time, I would like to summarize with this: I have learned lots about myself with having PFFD and I have also learned that determination and motivation are what "hold us back" in this world, not physical handicaps. I was taught long ago that I could achieve anything that I wanted to if I wanted it bad enough. I still belive that to be true. It nearly breaks my heart when I read stories of couples struggling to decide wheather they will abort their fetus that has been diagnosed with PFFD... It makes me even more thankful that I am here, in this awesome country with an awesome family leading an awesome life.
I hope that after reading this story you move on remembering that PFFD isn't a handicap, in fact, I think that it has given me an extra adavantage in life. It has taught me to encounter obstacles with ease which has contributed to leading a happy life. I am happily married and will soon be planning my family. I tell my husband everyday that I would not change anything about my life...nothing at all. I am thankful to have been born with PFFD and I am even more than thankful to have been blessed with a wonderful family.
Comments
Welcome to the club!!!
Welcome to the club!!!
If you should have any questions regarding pregnancy with pffd, please feel free to contact me - I went through it 3 times (wore my AK prosthetic throughout the pregnancies and delivered all 3 vaginally). My first word of advice would be to get copies of X-rays (or take them taken) of your adult hip and pelvis BEFORE you are pregnant. Then you will be able to show your ob-gynie what your pelvic basket looks like. It might save you a lot of grief. Cindy
Thank you!
I know this post is a bit old but i still wanted to say thank you for posting your story. I just had my 1st child(8-20-09) and she was born with PFFD. Didn't know until she was born that she had it(but that wouldn't have made us think about abortion) and I have been having a hard time dealing with it. I've been so worried about how it would effect her childhood and if she would be angry with me, and if she would grow up being able to do normal activities. We were told by the specialist that she could get bone lengthening procedures done but Im not sure how i feel about any treatments yet. I've read so many stories about amputees that have been so sucessful that im wondering if that would be better. But either way, knowing that you had a good childhood and have not been held back has really inspired me. Also, knowing that you were the oldest and that your parents had more children has also been a ray of hope. I know she's only 4 weeks old but once i found out about the problem, i decided that my goals in life were no longer possible...i figured there would be no more kids for me. I didn't want her to be angry if they were "normal", i didn't want to make her feel neglected during her treatments, and I am just so scared that if something happened to the next child that i wouldn't be able to live with myself(im taking this pretty hard as it is). But just reading your story has made me realize that if i put a hold on all my dreams for myself than i wouldn't be showing her how to be strong. So i just wanted to say thank you for your inspiration.
Living with PFFD
Chezzasmom,
I read your comment and wanted to comment on your comment, ha. I have lived with PFFD my entire life (I'm 22) and I just feel compelled to let you know that it IS manageable. PFFD is not a debilitating disease, neither is it something that can't be lived with happily. I'm glad the above post inspired and encouraged you. I want you to know that your child most definitely will NOT be angry with you. I won't say that it's not going to affect her childhood, because it will. However, she will still be able to be a very active, healthy, STRONG, happy young lady. You can't let this affect you in a negative way. You can't let HER see it affect you negatively. My mother always told me I could do anything that I wanted to do, and I have. I've always been very confident in that and living with PFFD has only made me more determined to accomplish the things most people think that I can't, and I do! I love proving people wrong, haha. I'm not an amputee and I've never had any surgeries. I've managed just fine with my long prosthetic. It hasn't always been fun or easy but it has made me appreciate things most people take for granted. PFFD doesn't make you "not normal." PFFD makes you a stronger person. It builds character and integrity.
Also, you need to know that you did NOT cause this to happen to your child. My mother had another child after me. My little sister is happy and healthy and she looks up to ME. She's inspired by me and has always tried to be like me growing up, ha. PFFD is not my life. PFFD is just some little thing I wake up to everyday that most people don't. It is just some thing I cope with. I have an amazing family and friends who have never treated me any different than themselves. They actually forget that I have PFFD, as do most people who know me. No one should feel sorry for me and no one does, I sure don't feel sorry for myself. I'm happy!
It makes me sad to hear that you thought your goals in life were no longer possible. Have as many babies as you want! She doesn't need to be alone. I don't know what I would do if I didn't have such a sweet supportive little sister to give advice to and take shopping and talk to. She won't be angry. If she knows you stopped having children because of her then she won't believe in herself. You do need to be strong for her but either way she will be strong, for herself. Your daughter will be happy and she'll love you AND any siblings she has very much. Don't take this so hard.
If you would like to know more about me or have any questions please feel free to ask! You can contact me on here or at babybrunette0819@aol.com
I really hope this has been of some help.
God Bless
-Julie