Hi, my name is Rebecca. I live in Canada. I was born with P.F.F.D, Aiken Type I, and coxa vera. After careful consideration my parents decided that they were not going to go ahead with an amputation which was suggested when I was a toddler.
I have had numerous surgeries including:
(2 years)- Valgus Osteotomy - right femur
(3 years)- Repeat Valgus Osteotomy - right femur due to loss of fixation
(9 years) - Left Distal Femoral Epiphyseodesis
(12 years) - Sutherland Double Innominate Osteotomy and Ileoposoas Recession
(13 years) - Ilizarov Leg Lengthening
(27 years) – Total Hip Replacement
The femur discrepancy was approximate 18 cm. I have had a lift on my shoe, numerous surgeries including the shortening of my good leg. I had a really great childhood. I was very active. I swam which now have my bronze cross. I skied where even my ski had a built up platform on it. I was active in sports during my youth. I went to camps. I learned piano where now I have my grade 9 and grade 3 theory. I was always on the go partly because I think my mother and father never wanted me to see that there was anything wrong. Disability is such a degrading term and can harm one's attitude. I never grew up thinking I had a disability.
My operations were hard to go through. There were many complications along the way. After I achieved 6-7 cm from the leg lengthening, they removed the hardware and I was told that it was most important to exercise my knee to exercise the muscles. When my knee was bending, it wasn't my knee and what actually was happening was my femur was bending at the point where the new growth had occurred. My x-ray shows that my femur bent 50 degrees. My femur was then straightened under anesthetic where I then fractured my femur five days after and had an intramedulary rod put into my right femur. Since this disaster, after the rod was removed when I was 17, I had increasing pain in my right hip. I ended up tearing the inside of my hip when I was training to be a nurse. Quickly, my ability to walk decreased as I moved from a cane and then from a cane to a walker.
I found this site because I was in the process of finding out what the next steps were. However, after I initially wrote this story, I have had a total hip replacement. It is much easier to walk now. I do have concerns about the future in terms of how long my bionic hip will last but I am talking one day at a time.
Growing up I had a hard time with my body image. When I was young it didn't matter because I had so much support. Yet, the hardest time was during my teenage years because I was harassed a lot by kids at High School. High School was weird because growing up I had a good peer group and my leg never interfered. Yet, after I was away from my peer group during the time when I had my leg lengthening which took about a year things changed as I was teased a lot when I returned to school.
Despite, my leg being an issue, I was and am very bright. My intelligence has helped me in coping with issues. This is important for parents to recognize. A child's physical condition is just physical. Yet, we all think of having the perfect baby but that is because it is what is fed to parents everywhere in society. A child's best tool is their mind if they are lucky to be able to even have that. A child can do anything especially in this day of age.
Anyways, off topic. I did have a huge identity crisis in my teens. Yet, I was able to go on and I quickly learned coping skills. I think it is really important that PEOPLE WILL ONLY NOTICE WHAT IS WRONG IF YOU ALWAYS HARBOR WHAT IS WRONG. I think parents need to be cautious that they do not encourage a negative self perspective in their child who has a disability. A disability is secondary to the person. The disability should not be ignored but the point is not the limit your child’s ability because of your own fear, shame, or whatever else YOU need to come to terms with … your child will not be the own who knows any different.
After High School, I decided to go to college and I received my Registered Nursing Diploma. I was able to complete my program with modified duties. However, I needed to end this career because it is too physical of a profession for me (specifically me … it may be fine for others with PFFD). So I went to University. I was an undergraduate in social sciences and I did very well. I graduated from a three year program in two years. Afterwards, I was accepted to law school at an excellent law school in Canada. I had my hip replacement during the summer between my second and third year. I am now completing my degree where I have been accepted to article at a prestigious law firm.
I am married. My husband is completing his physiotherapy program … works well for me!!! We have many dreams for the future including children (which I would like soon).
The point to this long letter, is that normalcy is not in the perception of other's but in the heart of the individual. I have not read many messages from people with P.F.F.D. but have read mostly parents comments. In a way, it is weird to see parent's reactions to not having the perfect baby but I am happy to see that the parents could see how ‘normal Holland is to Italy’. No baby or child is the same anyhow. Another point to make is that there are many different kinds of diseases. Many are not physical but mental. Many children have serious conditions that you cannot see but can affect them even more. In addition, we all get old … all of our bodies will eventually wear. I am surprised at how awesome my coping abilities are compared to many seniors and persons in the middle years who have been used to a certain level of functioning.
Sadly, P.F.F.D. is not a condition that has many options. It can create barriers on the road to life but the single most important aspect is attitude. There is hope. There are people out there that see past the physical and are special. I am glad that this site exists because it does help put P.F.F.D. out there. Internet is amazing!