Understanding PFFD by Rebecca Neal

Understanding PFFD by Rebecca Neal

  • Location:         Ontario Canada   

  • Born:               1977

  • Diagnosis:        Unilateral PFFD
  • Treatment:       Lengthening

  • Told by:           Rebecca Neal
  • Date written:    Dec 2000

    Understanding P.F.F.D

    Hi, my name is Rebecca. I live in Ontario in Canada. I am 23 years old. I
    was born in 1977 with P.F.F.D, Aiken Type I, and coxa vera. I was adopted
    by loving parents and my dad is a medical doctor. After careful consideration
    they decided that they were not going to go ahead with an amputation.

    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

    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 and to this day I still don't.

    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. Mind you, 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 anaesthetic where I then fractured my
    femur five days after and had a intramedulary rod put into my right femur.
    Since this disaster, after the rod was removed when I was 17, in the last
    two years I have had increasing pain in my right hip and now have a tear
    inside my right hip. I use a cane now which surprising is very hard for me
    to handle. Using a cane is harder then looking at my leg which is a battle

    I found this site because I am in the process of finding out what the next
    steps are. There is a specialist in Toronto, Ca, that primarily deals with
    P. F. F. D. It is hard to be hopeful but I know I need to have this hope
    to carry on.

    Honestly, I have had a really 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 alot by kids at highschool.
    Highschool 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. I use to have to stay
    home and was in a wheel chair and had a tutor. Before the lengthening, I
    had positive self-esteem. Actually, I was even a page in the Provincial
    parliament for 5 weeks. I was 12 and lived in a different city, Toronto,
    and was able to go to work everyday and even mange the subway system by myself.
    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 parent's 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 an exchange program to Australia for a year. So, when I
    was 15, I moved to Australia and lived with several families. I went to school
    and was on the Student Council. My leg was never an issue to me because I
    didn't see it as an issue. THIS IS THE KEY: PEOPLE WILL ONLY NOTICE WHAT's
    WRONG IF YOU ALWAYS HARBOR WHAT IS WRONG. The best thing is to love what
    is right and learn how to cope with what's wrong.

    It was hard coming back from Australia because once you see a beautiful part
    of the world, my home town seemed glum. Arriving home was hard. I rebelled
    even more and actually left my parent's house. I did complete my highschool
    at an adult education. I moved to a different city and rebelled some more.
    Then ended up in Rehab because I had developed a problem with self-esteem
    and drinking/drugs.

    Yet, remarkably, I moved back home where I had always gotten support and
    love. I decided to go to college and just recently received my Registered
    Nurse Diploma. The last year was hard because that was when difficulties
    with my leg resurfaced. Yet, my program allowed modified duties. I did spend
    6 months working on a spinal and brain injury unit where there was alot of
    physical demand. At night, I would dose myself in pain killers and hot water
    bottles because my leg hurt so much from the work. Yet, after I graduated
    from my program, I was employed at the hospital with modified duties. That
    being, I was allowed to sit down when I need to rest for a bit.

    However, I needed to end this career because my leg has gotten worse. The
    pain in my hip is severe and even when at resting position. My lift on my
    shoe is getting gradually longer because for some reason the femur is moving
    up because my hip is deformed. So, as I await to see what happens next. I
    have started University.

    I love University. I am an undergraduate in social sciences. This is my first
    year. I am doing very well. I study alot and have been getting above an 80
    in my exams and papers. I hope now to finish two years of social sciences
    majoring in women's studies and then go into law. Law is a great career for
    me to aim for because I need a sitting down job.

    I have had not many friends along the way but the one's I have had have been
    close. I have has several boyfriends. I am now engaged. We hope to be married
    in a few years. He knows of my leg. He loves me even more. He can see my
    scars but he prefers to gaze into my eyes with so much warmth. He touches
    my leg and hip with such tenderness some times I want to cry.

    He is going to University, too. We have two classes together. He wants to
    go into Physical Therapy. He is amazing and my family thinks he's special,

    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 so happy to see that the parents could see how normal Holland is to Italy.
    No baby or child is the same anyways. 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 can not see but can effect them
    even more.

    Sadly, P.F.F.D., is not a disease 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 pass the physical and are special.
    I am glad that this site exists because it help put P.F.F.D. out there. Internet
    is amazing!!!!!

    I would loved to hear from anyone that is coping with P.F.F.D.

    My email address is
    Keep it up!!!