You are here

Experiencing PFFD

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 various surgeries including the following:

(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

My femur discrepancy was approximate 18 cm. I have a lift on my shoe, and have had surgeries including lengthening of my short leg and shortening of my long leg.

I have had a great childhood. I was, and still am, very active. I received my bronze cross. I skied on family vacations (my ski had a built up platform on it). I was active in various sports during my youth e.g. baseball. I went to a camp every summer for two weeks. I played piano (grade 9 and grade 3 theory). I think my parents never wanted me think there was anything wrong with my capabilities. I grew up not thinking I had a disability and was limited by my physical attributes. This helped me achieve a positive image of my self.

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 instructed to exercise my knee. When my knee was bending during exercises, it was actually my femur that was bending (the part where the new bone was) because the new growth was not hard enough. An x-ray showed that my femur bent 50 degrees. My femur was straightened to fix the problem. Five days later, I fractured my femur by putting too much weight on it. Then I had an intramedulary rod put into my right femur to prevent further bending (was a good technique). The rod was removed when I was 17. About 6-7 years later, I had increasing pain in my right hip. I had torn the inside of my hip when I was training to be a nurse. After the tear, my ability to walk decreased as I moved from a cane and then from a cane to a walker (over a period of about 5 years). I eventually had a hip replacement (was a very good decision). I do have concerns about the future in terms of how long my new hip will last but I am taking one day at a time. It is important to live in the present and enjoy life now.

As a teen, I had a hard time with my body image because of my leg - but I think this is totally normal. My parents were very supportive and new that it was part of being a teenager. It's interesting how some of the worries I had when I was younger, etc. the appearance of my shoe, have all gone now that I am an adult. I think I focus on the positive, realizing that my leg cannot change and that my leg does not define me.

My intelligence has helped me with coping. This is important for parents to recognize. A child's physical condition is just physical. Parents seem to expect the perfect baby without realizing that the child's personality, etc., will be what counts. We live in a society which focuses on the 'physical' but there are so many things a child can do without being able to run a 5 km race. There is singing, playing an instrument, reading books, writing stories, painting, etc. Furthermore, higher paying jobs as an adult aren't really the 'physical' ones. There are so many great careers that adults, like myself, can do, etc. social work, teacher, artist, lawyer, human resources, judge, etc.

I think it is really important to provide understanding but not to 'expect less'. I am thankful my parents encouraged me to seek my best without defining what that was for me. As previously mentionned, and I cannot highlight this enough, disability is secondary to the person. The disability should not be ignored but the point is not to limit your child’s ability because of your own fear, shame, or whatever else YOU need to come to terms with … your child will grow up with their condition knowing no different from anyone else if you don't harbour, protect, limit, etc., your child's capabilities and self-worth.

Back to my life, 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. I had my hip replacement during the summer between my second and third year. I graduated and articled in a prestigious law firm. I am married. My husband is a physiotherapist. We have many dreams for the future including children (which I would like soon).

The point to this lengthy 'blog' is to convey my belief that normalcy is not in the perception of other's but in the heart of the individual. 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.

Yes, PFFD can create barriers on the road to life but the single most important aspect is attitude. There is hope. I am glad that this site exists because it helps put PFFD out there. It is very encouraging to read so many stories involving bravery, triumph, support, positiveness, and spirit. I believe that as we go through difficulties, we become better persons who can offer more to the world as we become sensitive to suffering, are encouraging of success, and have much to share.