The Melorheostosis Fund

1st Annual Melofund Charity Golf Tournament

2010-03-15T19:50:00.000-07:00

What: Charity Golf Tournament and largest auction/fundraiser to date benefiting the Melorheostosis Association.

When: May 22, 2010

Where: Foster Golf Links - 12424 42nd Ave S, Tukwila WA 98168 (map)

We plan to kick off our first year with contests, prizes, lunch and 18 holes of golf. All donations and proceeds go directly to the Melorheostosis Association to fund research and development of a cause and cure for Melo.

Right now is your chance to become one of the people that make a difference. Your participation and/or donation to this golf tournament will make a difference to one of the people who suffer from chronic debilitating pain every single day.

You can give them hope. This is your opportunity to join us in making this first year of fundraising through the Melofund a huge success!

For more information please contact Mykel Papke at mpapke5@gmail.com.

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

2008-11-09T08:19:00.000-08:00

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...

2008-10-02T19:20:00.001-07:00

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.

Contact Us

2008-05-13T22:05:00.001-07:00

For more information please contact:

Stephanie Papke

sdpapke [at] hotmail.com

What is Melorheostosis?

2008-05-13T22:04:00.000-07:00

By Melorheostosis Association UK

Melorheostosis is a rare, non-hereditary bone disease which affects both sexes. It affects both bone and soft tissue, and while benign, can result in severe functional limitation, extensive pain, and significant deformity.

It is usually apparent in early childhood and even in the first few days of life. About 50% of persons affected will develop the symptoms by the time they are 20 years of age. On x-rays, the disease's sclerotic bone lesions looks like wax dripping down the side of a candle. Hence its name; which is derived from the greek melos "limb" and rhein "to flow".

With an estimated incidence of 0.9 cases per million persons, it can be calculated that there are approximately 1,000,000 to 1,500,000 persons with meloreostosis currently alive. However, only about 300 cases have been reported.

Patients with meloreostosis may also have associated cutaneous and soft tissue lesions such as vascular malformations, neurofibromatosis, hemangioma, arterial aneurysms, linear scleroderma, tuberous sclerosis, hemangiomas, and focal subcutaneous fibrosis.

Adults generally complain of pain, joint stiffness, and progressive deformity. In children the condition affects mainly the bones of the extremities and pelvis, and may result in limb length inequality, deformity, or joint contractures. Joint contractures may be accompanied by extraosseous bone formation.

The cause of meloreostosis is unknown, but one theory proposed is that the lesion arises from an abnormality of the sensory nerve of the affected sclerotome.

A sclerotome is a zone of the skeleton supplied by an individual spinal sensory nerve, and represents a basic unit of vertebral embryonic development. One bone may be involved (monostotic) or several bones may be involved (polyostotic), or one limb may be affected in several, usually contiguous areas (monomelic). The lesions may affect only one side of a bone or group of adjacent bones, and these bones are usually related to the same sclerotome or group of sclerotomes.

Cortical lesions are progressive and may result in narrowing of the medullary canal and stenosis of an adjacent lumen, foramen, or of the spinal canal. Motor or sensory nerves may be compressed and become symptomatic, such as the suprascapular nerve in the scapular notch. The cortical hyperostosis may extend into nearby joints and cause loss of motion.

Extensive soft tissue masses may develop, most of which are adjacent to the involved bone, but some may be unconnected to the bone. The soft tissue masses become more ossified over time. Heterogeneous signal intensity is seen on MR imaging due to the mixture of osseous, fibrous, adipose, and cartilagenous tissue these contain. The soft tissue lesions enhance with IV gadolinium. An erroneous dignosis of sarcoma is possible, particularly when the soft tisue lesion is unmineralized.

Biopsy shows variable degree of marrow fibrosis, along with markedly irregular bone with mixed areas of lamellar and woven bone.A mixture of osteocartilagenous, fibrovascular, and adipose tissue is seen in the soft tissue masses.

Isolated cases of malignancy have been reported in association with melorheostosis, one osteosarcoma and one malignant fibrous histiocytoma. At least one death has been reported due to complications from this disease. The cause of death was not related to the bone abnormalities; the patient developed resistant pleural effusions due to associated vascular malformations.

The clinical course is slowly progressive.