Understanding PFFD by Rebecca Neal
Born: 1977
Treatment: Lengthening
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
field.
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,
too.
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
smokey.thebear@sympatico.ca.
Keep it up!!!