Jane's Inclusion Body Myositis Survivor Story:

"My disease is called IBM, or Inclusion Body Myositis. IBM causes muscle degeneration - muscles develop inclusion bodies, which are similar to plaques in the brain of Alzheimer patients, atrophy, & lose function. It has been referred to as the ALS of muscle. Currently, there is no treatment, and although it is a rare disease, I am told it is on the rise. We don't yet know what causes it. One theory is that it is triggered by a virus, or an environmental mutagen. Although there is an inflammatory component, suggesting that it may be autoimmune, the disease does not respond to traditional anti-inflammatory or immunosuppressive drugs. My muscles are deteriorating rapidly, and I am losing function of my body. I have difficulty walking, and my arms and hands have become very weak so that even simple tasks like lifting a half gallon of milk, washing my hair, getting out of a chair, and buttoning my shirt, are difficult now. Swallowing has become increasingly challenging. The disease affects the muscles in my torso/ribcage, and recently seems to be affecting my diaphragm. I have two girls, ages 13 and 15, and a devoted husband who keep me going. This has been a difficult journey for them, too. Prior to my diagnosis 3 years ago I was very active, and it’s been difficult for them to see me deteriorate. There are no approved treatments. I tried IVIG for a few months. Although it offered some benefit, my insurance stopped covering it and the cost for one dose is $20,000-$40,000. (No, that’s not a typo.) With no treatment options available, I made the decision to enter a clinical trial at Northwestern to have an autologous Hematopoietic Stem Cell Transplant (HSCT). Unfortunately, the benefits from the transplant lasted only a few months, and left me with significant medical bills. Few doctors know about my disease, so I’m seeing several specialists, including a doctor in Boston. The travel costs and co-pays for multiple doctor visits are also putting a financial strain on my family. I am the primary wage earner, and hope that I can continue to work into the future, which is uncertain. Through all of this, I am optimistic that a treatment will be discovered."

Eddie's Duchenne Muscular Dystrophy Survivor Story:

My name is Don S. Hazeldine, my son's name is Eddie. On Eddie's 4th birthday we were told Eddie has Duchenne Muscular Dystrophy. I had never heard of it before that day. Eddie was born premature, was small, and had been receiving PT from Easter Seals and school. My wife mentioned one day to the therapist that she had an uncle that died when he was twelve years of age and had, she thought, Muscular Dystrophy. The Therapist suggested she get Ed tested. The week before the results came in I prayed and truly believed there was no way my boy could have any form of muscle disease. My arrogance then. Well I've been humbled. These years have been mentally dificult for me and my family. I started Eddie on the best know treatment on day one. Although treatments and medications may come with side effects we have made the decision to put Eddie on every supplement that may prolong his ability to walk. We as a family are trying to beat the clock. I want him to live until there is a cure. The longer he walks, the more likely that is. Except for the shock of first finding out he had DMD, these past few months have been the hardest. Eddie falls down alot now, he usses a seat for the shower, gets on and off a special school bus with a wheelchair, and often can't make it to the bathroom in time. His little sisters see the same things happening as my wife and I do, which has affected them mentally as well. I feel helpless, his mom blames herself, and one of my daughters is always angry. Please educate yourself about Duchenne. In short, it is a genetic disorder passed from mother to son. It is extremly rare for a female to have Duchenne being the disease has an x-linked recessive inheritance. Duchenne prevents the body from producing the main protein to build and or maintain muscle. So if Eddie physically overworks, that muscle is gone forever. If he does no activity the muscles wastes away. It is like a 'double edged sword'. This was very hard for me to write. I thank the Muscle Movement Foundation for working with our family
-Don Hazeldine

Marci's Myasthenia Gravis Survivor Story: