It is Thursday night, October 2nd at 7:20pm and I am compelled to write my first blog on my wesite (long overdue I know), because today I find myself in an extraorinary amount of pain. I dont know if it is more frustrating that there is no obvious reason for the pain or that there is nothing I can do about it. Those who know me well, know that I very rarely express to anyone that I am hurting. But today, figuring in some way it might help, I told lots of people. I suppose it did help, and everyone that cares about me is so wonderful and sympathetic, but there is no way I can make them understand how it feels. I guess in some way I feel like if I can describe my pain so that they can relate it to something they have felt before, that they would really understand and that might justify me feeling so badly. Everyone feels pain in their life at all different levels. I guess what is so difficult about pain associated with a rare bone disease like mine, with no established cause, cure, or treatment, is that there is a feeling of hopelessness that makes the pain even worse. Today I wondered, if I am blessed enough to live a long life, how in the world am I going to tolerate this pain that seems to be getting more severe, every day, for the rest of my life. Chronic pain is a part of my daily life, and i hardly ever think about it, talk about it, or let it bring me down. Today it beat me...but tomorrow is a new day. Thanks for listening.
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!
