Entry # 15
Putting my journey aside for a moment to share Camerons’ story. In my introduction I had mentioned that I would be dedicating this journey to Cameron in an effort to increase awareness of this incurable disease – Dermatomyositis. First, an introduction to his disease _
Dematomyositis is a Rheumatoid disease. It is unclear what triggers the disease. It appears not to be strictly genetic or environmentally caused. Cause may be symbiotic – genetically inclined triggered by environmental circumstances.
Myositis is a type of autoimmune disease in which the body’s immune system starts attacking normal muscle causing damage and inflammation. While muscle inflammation is the primary characteristic of this form of arthritis, myositis can also affect a number of organs such as your skin, stomach, lungs or heart. Myositis belongs to a larger group of diseases called myopathies, which are diseases that affect your muscles.
Dermatomyositis is a type of myositis exhibiting a skin rash. Myositis typically affects the large muscles of the arms and legs, but can also affect muscles associated with swallowing or breathing.
Camerons’ story _ Four years ago, as a junior in high school he had just completed a successful season as starting quarterback with hopes of earning a scholarship to play at the collegiate level. That winter both he and his mom got the flu. Three days later mom was fine but Cameron was not. He was experiencing growing muscle and joint pain. His skin was beginning to rash and blot throughout his body. (Think pig). Finally, his mom (a nurse) took him to the doctor. Different treatments and medications proved ineffective until a steroid treatment seemed to help. However, the disease had taken a toll on Cameron and he was unable to play football his senior year.
So that fall of his senior year Cameron completed applications for college and started a band playing the drums at weddings and miscellaneous gigs. But that winter the disease re-emerged. This time Cameron underwent treatments at Children’s Hospital in Ann Arbor and eventually his disease – for lack of a better description – de-activated. But he no longer could play in his band due to the progressive physical toll on his deteriorating body. Note: With treatment, patients can experience periods of remission, but the disease tends to recur (flare-up).
Over the past four years these flare-ups keep re-emerging. Though he continues to battle, it has taken a toll on his body and overall health. Today, there is little left of my nephews large muscles. Around 190 lbs. just four years ago, Cameron weighed under 120 lbs. when I last visited him. I understand the disease now has migrated to his stomach. As of late, with each flare-up Cameron needs assistance in basic activities we take for granted including: eating, going to the bathroom, showering. I’m in tears at the moment. This damn disease!
I feel helpless and my prayers are not doing enough. This is why I am dedicating this sailing undertaking as a means to help raise awareness. And, if you may be so inclined, I ask you donate to the Arthritis Research Foundation at arthritis.org. And, thank you for following me on this blog.
Never Too Late For 