After reading a recent People Magazine article featuring 2 young girls with PFFD, I finally learned the medical term for my Dad's shortened leg. I am thrilled to see a support forum for people with limb differences. When my Dad was born in 1918, no specialist had ever seen anything like his shortened right leg (his knee was essentially at his hip), and I am fairly certain that he never met another PFFD patient in his life. The doctors told his parents he would never walk, but he did, for 88 years.
My Dad had difficulty finding employment when he graduated from high school during the Depression (no EEOC in those days - most companies wouldn't even let him fill out an application), but eventually found a factory job. When he retired from the same firm, he was no longer a factory worker, but the CFO of what had become a Fortune 50 company. He did occasional consulting work until he was 82.
My Dad played baseball and football and swam when he was young, and was still riding a bike in his fifties, and golfed and bowled beyond that. He did yard work and home maintenance until he moved to a retirement community at 81. He was married, had 4 children and 8 grandchildren, none with any limb differences. None of his siblings, nieces, nephews or other extended family members had PFFD. In his mid-60s he started using a cane, and switched to a walker at 84. After he turned 88, he relied more on a wheelchair, but for health reasons unrelated to his leg. At the time of his death at 88, his shortened leg and associated joints were still functional. His primary arthritis complaint was about his hands, never his legs or hips.
I wish you and your children all the luck and happiness that my father enjoyed.
Comments
Your dad
Hello Joan,
I've just read your dad's story with interest. Did he wear a prosthetic leg to counter his leg length discrepancy, and was his right foot at about the knee level of his left? That seems to be how it usually is with unilateral cases of pffd. I've read of other cases where people have led perfectly normal lives with this condition and never known that there was a name for it, or that there are many others out there with the same thing. I think the term Proximal Femoral Focal Deficiency has only been in existence since the late 1960's introduced by Dr G.T. Aitken, who's classification model most American Dr's use today.
The People Magazine article has definitely made people across North America more aware, which can only be a good thing.
Dave Bailey
Hi Dave, You've described my
Hi Dave,
You've described my Dad's leg pretty accurately. The heel of his affected leg was about even with the kneecap of his normal leg. He wore a prosthetic leg from from about the age of 6 on. Prior to that, he just scooted around on his hands and knees, or for longer distances got a ride in a wheelbarrow from obliging siblings and neighborhood kids. His foot was in a permanent extended position (I don't know if it was surgically modified or if it just grew and locked in that way from over 80 years of prosthetic use), and his prosthetic leg was shaped to accommodate the shape of his foot (with the heel bearing most of the weight) and laced 12 to 14 inches above his affected ankle.
I think that PFFD is still not readily recognized by many health care professionals in the U.S.. When he was hospitalized for pneumonia at age 87, and I was helping him remove his prosthesis and get ready for bed, one of the nurses attending to him asked him when his amputation had been done! Dad and I looked at each other and started to laugh. He was heading towards mid-stage Alzheimer's at the time, but he still had enough of a sense of humor to think the idea of a surgeon amputating his thigh and reattaching his shin was pretty darn funny.
He grew up in Chicago and lived in the area his whole life. The population of the metropolitan area, including the suburbs, is now around 6 or 7 million people. Never in his lifetime did he, or any of his family members, friends, or doctors meet another person with PFFD. One specialist visiting from Europe that saw him when he was young said that it was more common in Germany. His mother was part German, but a Chicago native. He always figured it was just a fluke. My daughter saw the People magazine with the PFFD article in a doctor's waiting room and came home quite excited and announced "Grandpa's leg has a name!" We were really surprised.
He had a great attitude about the condition. All of his brothers, cousins, friends and neighbors served in WWII, and some came home with missing or damaged limbs. He always said that he felt very fortunate that he was born that way, and never had to adapt to a loss like the veterans did.