In 2006 the United States House of Representatives designated September 21 as National Myositis Awareness Day. Occurring on Sunday this week, Jerry Williams of Milford used the opportunity to bring awareness among the public and physicians of this rare disease that he was diagnosed with in 2005. Feeling the effects of Myositis two years earlier, he was originally told by doctors that the pain was phycological until a muscle biopsy was performed. Williams does not want individuals and families that are facing this disease to have the same added challenges that he experienced associated with a lack of awareness.
Myositis, also known as Idiopathic Inflammatory Myopathy, is a group of rare diseases that can arise spontaneously and that the cause of is unknown. A very challenging disease to detect, this group of diseases is believed to be autoimmune in nature causing symptoms such as muscle weakness, trouble with swallowing and weight loss. After experiencing two weeks of intense pain in his legs along with general weakness, Williams visited several doctors locally and at John Hopkins Hospital. According to Williams, each physician came to the conclusion that the pain he felt was phycological as multiple testing turned up no simple diagnosis. In 2005 he received a muscle biopsy and was diagnosed with polymyositis.
“Since it is such a rare disease and not much is know about its cause or effects, many physicians and health care experts know little about the disease,” commented Williams. “There is no known cure and even the medicine that is given to treat the effects is not specific to the disease.”
With little knowledge on the group of diseases, Williams wanted to advocate for awareness of the condition not only to physicians but for individuals experiencing similar symptoms to his, and their family members. Leading this effort, he began several social media groups including Myositis Support & Understanding that act as a resource for information and also an online community where individuals can share their own experiences with others.
“It was difficult for me to find others locally that had the same experiences as myself, the online groups allow people that ability to share experiences without having to travel” said Williams. “It has provided and outlet for patients to get information, know what questions to ask and learn from the experiences of others.”
As these resources continue to grow Williams looks forward to focusing on providing education for patients and physicians while encouraging both groups to learn more about Myositis. On Sunday, September 21, Myositis Awareness Day, Williams launched understandingmyositis.com. The Myositis Support & Understanding organization is currently filling for non-profit status and will raise money to educate, spread awareness and provide funds to patients and families with no insurance or those underinsured.
“This disease is very difficult to diagnose because it is so rare and because it overlaps many over diseases that are associate with autoimmune complications,” stated Williams. “There is no cure so it is a life-long struggle for those that have the disease. We hope that bringing awareness to the public, we can increase the chances of finding out more about the disease.”