Name of patient: Cortney Brown
Email address: email@example.com
Adult: 31 years old
City and state: Phoenix, AZ
Area(s) of body affected: Right Hand - 5th Metacarpal
I was first diagnosed with Melorheostosis January 2011 and since then the journey has not ended. In January 2012 I was placed on a donor list for a right 5th metacarpal bone. I received the news that I had a donor June 2012, however, my surgery didn't happen until mid November 2012. The reason for the transplant was due to a failed attempt of "shaving" the Melorheostosis from the bone and placing bone graphs on the first surgery, but the Melorheostosis came back with a vengeance.
So, after having the transplant the cast came off in late May 2013. Six months pass and I go for my six month check up in October 2013 to see how the bone is holding up and I was given the news that the transplanted bone was fractured at the base in two spots. I was immediately put back into a cast with using a Bone Stimulater machine to help the fractures heal.
As of August 21, 2014 I remain in a cast. The fractures healed, however the transplant bone has seemed to thin out. I asked my doctor what could cause this to happen and he is unsure. With lagging medical attention from my current doctor as I informed his nurse multiple times of my Vitamin D deficiency my surgery that was scheduled August 6, 2014 was halted after proof was given to my doctor of my Vitamin D deficiency. As of right now I remain in a cast as I twiddle my thumbs in wonder of what the outcome of my right hand will be.
Since this journey I have lost the ability to do the things that I have enjoyed, like hitting the driving range, or the batting cages. And with being in a cast I have experienced left hand pain with constant use of it.
This disease has ruined my life. I went to massage school, graduated, became licensed and was shortly ripped of my dream career all because of a disease that is unknown with no cure, prevention or treatment.
There is no amount of pain pills that can help with the pain, they only lead to addiction and higher amounts of dosage being prescribed.
I wish we could raise a higher awareness for this unbearable disease that more and more are being diagnosed with. With every treatment that any of us endure is merely experimental. We are not lab rats. We hurt and we don't understand why this happens.
I will end with this. When I had my bone transplant, I was able to donate 3/4 of my metacarpal bone to the head research facility in Belgium. It is up to us to donate any tissue samples so we can find a treatment and maybe a cure!
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