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Genetic link...If I have PFFD what are the chances I will pass it on?

Hi. My name is Aeryn and I'm 22 years old. I have been in a committed relationship for 2 years now and though I am not getting married or having children anytime soon I was wondering if anyone could give me information on the genetic ties of PFFD. I was born with PFFD in 1987, had four leg lengthening procedures, countless surgeries and my legs are the same length (as of July 2007). I have always been very scared that I will pass on PFFD to my children and have thus always wanted to adopt instead of taking the risk. My boyfriend would like to have biological children and I am warming up to the idea but haven't researched it enough. Can anyone give me some advice? Has anyone researched this to any extent? Or are you a mom who has a child with PFFD, maybe you could tell me what doctors told you about it. Or if you have PFFD and have had children, how are they?

Thank you!
Aeryn Nini
Detroit, MI or post on this forum please!


Hey girl! Sorry I've been so busy but I will get back to your email probably tonight. However to answer this - I've always heard its not genetic.

Hi Aeryn,
I'm pretty sure the chances of passing it on are either slim or none. I have two perfectly healthy, even-legged kids. My son is 7 and my daughter is 2. My only problem is keeping up with them!


It has been my research that PFFD has no known genetic component unless you and your mother are both type 1 diabetics, then a syndrome may be involved. I have two biological children without disabilities. However, no matter if you have a genetic condition or not, be sure you are ready for ANY condition that a child may have. There are no guarantees or warranties in parenting...only unconditional love and joy.

Sorry to be the one with the bummer answer but I have 9 year old twin boys who BOTH have PFFD. They are they first genetic case Children's in San Diego has seen. Our prosthetist has a patient who has PFFD and so does his father. So our boys know it is a possibility their own kids might have it some day.

I have also done some research that says there is no known genetic link, however we can never be 100% about things can we. One question that has always bothered me and someone may be able to answer is carrying a child. As I have a problem with my hip too my pelvis is not aligned, would that affect carrying a child? And would child birth also be more difficult?


I am a bilateral PFFD with two children that are fine. From going to genetic counseling it is constantly being said there is no genetic link to the deficiency. However, I did experience 1 miscarriage age 5mos, a preterm birth at 7mos and a full term birth at 9mos, but ended in c-section. With each pregnancy I was put on high risk level and needed a cerclage to keep my cervix closed. If someone were to ask me today if I think the PFFD had anything to do with it I would reply %85 answer of yes. I say this because the pelvic is not really aligned correctly due to the hip and femurs being off. However, who is to say that I would not have had these problems if I did not have PFFD? The only thing I can tell you for sure is that research shows there is NO genetic link.