Young People Get Osteoporosis Too 

Butterfly1b1  MY STORYButterfly1b5


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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.                    

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. 

Nola New Growth