For more information please contact:
Stephanie Papke
sdpapke [at] hotmail.com
My Story
My name is Stephanie Papke. I was diagnosed with a rare bone disease called melorheostosis in 2002. I suffer from severe, chronic pain on a daily basis and have lost over 50% of the strength and function in my left arm.“Melo,” as it is commonly called, is a rare and progressive disorder characterized by the thickening of bones. It affects both bone and soft tissue, and while benign, can result in severe functional limitation, extensive pain, and significant deformity. Melo is a “one in a million” disease--fewer than 300 cases have been diagnosed in the world.
Melorheostosis’ rarity, combined with minimal support and funding, means very little medical research has been performed. Melo has no cure, no known cause, and no effective treatments.
Melo affects children most frequently – the majority are diagnosed under the age of 20. I was fortunate enough to have a successful volleyball career at Washington State University from 1993 – 1997 before feeling the painful effects and limitations of this debilitating disease.
Many children, however, will never have the opportunity to share my experience of being a high school and collegiate athlete. These children are the driving force behind my passion to find a cure for melorheostosis.
As an adult I can stand the pain. I cannot, however, stand by and watch these young people’s quality of life deteriorate. I will not allow them to live without hope.
The only way this goal can be achieved is with YOUR help. Finding treatment, a cure, and a cause starts with funding for research.
Please join me in this cause. Together we can give hope to all people affected by melorheostosis. Thank you!
What's New
Subscribe to:
Post Comments (Atom)
3 comments:
First off I'm so sorry to hear this...I know we spoke briefly about it....but I had no idea the extent or the rarity and/or lack of support for a cure.
You're awesome for doing this Steph...I'll keep passing this on!
-Kirsten
Hey stranger...
How awesome that you are doing this... I wish you the best of luck and let me know if you are planning any fundraisers or events... If I can't make it, I will be glad to make a donation...
Take Care
Sarah
I'm absolutely astounded to find that I am only one of 300 reported cases. I knew it was rare....! Guess that makes us rare eh Steph:)
Good luck
Lyn
Post a Comment