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 I
never imagined that anyone my age could develop
osteoporosis. But I did, and my life has never been the
same since because of it. Osteoporosis has pretty much caused me to
lose all of my independence. I have to use a wheelchair
to get around. My mom has to assist me with
the most basic activities of daily living.
Many things I took for granted I may never do
again.
The old saying "you don't miss something until it is
gone" certainly is true. Because the most simple things
like getting up out of a chair without giving it any
thought are the things I miss most. And now I am in so
much pain all the time, I have to psych myself up just
to get out of a chair because I know that it will hurt
so much. I sit there thinking if there is a way that I
could get up that would not hurt so
much, but no matter
what I do the pain is still there. Every little movement
that I make, the pain is intensified even more. It is
strange because I don't even remember what it is like to
wake up in the morning or go to sleep at night with no
pain, it has been that long.
I just recently
learned of the cause for me developing
osteoporosis, it is Fanconi 's syndrome.
Fanconi's syndrome is a set of kidney malfunctions
brought about by a variety of seemingly unrelated
disorders. Kidney malfunction leads to excessive urine
production and excessive thirst, resulting in deficits
of water, calcium, potassium, magnesium, and other
substances in the body. It often leads to bone disease
and stunted growth.
Normally, kidneys cleanse
the blood and keep its salt, water, and acidity in
balance, leaving what the body needs in the blood and
putting what the body doesn't need into the urine, which
leaves the body. This task is performed in two steps.
First, the blood is filtered through a kidney structure
with small holes that keep the cells and large molecules
in the blood. Second, some of the small molecules in the
filtrate, needed by the body, are reabsorbed and
returned to the bloodstream.
This reabsorption step is
defective in Fanconi's syndrome. As a consequence,
substances that are normally reabsorbed, like glucose,
amino acids, small proteins, water, calcium, potassium,
magnesium, bicarbonate, and phosphate, are lost and the
body becomes overly acidic.
II was initially diagnosed with severe osteoporosis
after sustaining multiple compression fractures along my
spine. Three years later I broke my right foot,
and then two years later I broke my right foot again.
Four years later I suffered an L1 compression fracture,
and eight months later I fractured my left tib-fib.
In the twelve year period since I was
initially diagnosed with osteoporosis, I have taken
various medications to treat it. The first were Calcitonin injections which showed no improvement. Then
I tried Fosamax and Actonel, I couldn't tolerate either
of them due to esophageal problems. After that I took
Didronel which showed no improvement. And then I
started taking Pamidronate infusions which turned out
to be the first medication to show any improvement at
all since my initial diagnosis.
Once the FDA approved Forteo, I started
taking it in January of 2003. After only three months
of taking the Forteo injections, my latest DEXA scan
results showed a 14.4% increase in spine and a 6%
increase in the hip. Unfortunately, once I
completed the two years on Forteo I lost all that I had
gained and more. I am now on boniva, but will
start on Reclast soon.
I
would also like to say that I would not
have been able to deal with osteoporosis without the
love and support of my wonderful mother and father. My
parents have done everything possible to make dealing
with osteoporosis easier for me, and for that I am most
thankful to them. So even though I am amazed that I
have had any success in my life, I am sure it is because
of their love and support. Thank you mom and dad
because without you I would not be what I am today.
I also have to thank Dr. Jill Lindberg
who has been an absolutely amazing doctor to me. It was
because of her hard work and dedication to find the
ultimate treatment that I would respond best to over the
past eight years that we came upon Forteo. She is an
excellent physician who turned my dream into reality
when my bone density improved.
My hobbies and special interests have
played a tremendous role in helping me to cope with
osteoporosis and keep my mind off of my medical
condition twenty-four hours a day. My absolute favorite
interest is The Backstreet Boys (surprise, surprise)
listening to their music has helped to serve as an
escape from all of the stress in my life. And more
often than I can remember, their songs have soothed my
day and lifted sadness from my heart. Heartfelt thanks
to each of the guys for inspiring me and giving me a
reason to smile.
Osteoporosis is a debilitating disease
that robs individuals of their independence, self-esteem
and mobility. As a family member or friend of someone
with osteoporosis, it is important that you give
support. Although they now have the disease, they are
the same person they were before being diagnosed. The
most important thing that you can do to help someone is
to treat them the same as you always did. Continue get
together such as going to lunch, shopping or the movies
together as you did before. Don't assume that they would
not be interested in going anyway because they have
osteoporosis now. At this time in their lives they need
you now more than ever.
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