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


Most people sit across from their doctors to look for answers, we sit next to ours.



Its Sunday morning November 9th at 8:37am. I have posted some pictures from my wonderful trip to Washington DC a couple of weeks ago for our annual Melo conference. On the left is the White House, in the middle is me standing in front of the Washington National Monument, and on the right are some of my Melo friends. Jen Gordy from Colorado is on the right, her husband is on the left, and Sajjad from Bangladesh is in the middle. Sajjad is one of many people who came a long way in hopes of finding some answers about his rare disease. What he found out is what I already knew, there are no answers. What he did find were doctors that knew how to pronounce the disease and who would love to someday have some answers for us. What he also found for the first time were fellow patients like me. There is something so powerful about finally looking another patient in the eye because without even speaking, you understand each others daily struggle. I go back every year because there is something very thereputic about being surrounded by people who are all so different, except in one very important way. We are all instantly bonded by our disease because those ties to complete strangers is all we have right now. There are no answers, there is no cure, and there is no treatment.
Our hopes for a better future lie on a small roomful of people comprised of a few doctors who are graciously donating their time to help us, a handful of hopeful patients, and some very supportive friends and family. Our last evening in DC we all sat around a conference table, about 30 people in total, and brainstormed about how we were going to progress as a disease. Most people sit across from their doctors to look for answers, we sit next to ours. We are the pioneers of Melo, we know as much about our disease as the smartest people in the world.
So my trip to the conference in DC was bittersweet. Its always so great to see the people from past conferences again and to welcome the new people that have just found the Melo family. I walk away hopeful, thankful, and validated, but with the stark reality that any sort of change is a long, long ways away. I will go back again next year though, and in the meantime, I will do my part to pave the way for future patients. People that come to the conference for the first time are looking for answers. People that come after that are coming to be a part of the solution. My hope is that someday, when a patient finds our family for the first time, we will have an answer.
Thanks for listening...

Posted by Stephanie at 8:19 AM

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