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This fundraiser ended on 01/26/12

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Ken's family is asking for help w/co-pays, but also to make others aware of this debilitating disease. Please Help by GETTING INVOLVED!!!

Imagine having breakfast one morning and choking on a cup of coffee or a glass of water. After you wait for 15 minutes or so, you can take another sip or two then you choke again.

That is exactly what happened to Ken. At 56, he had worked his life as a long haul 18-wheel truck driver and later in a customer service office. Then, after a motorcycle accident, he was left on total disability with a rebuilt lower back for the rest of his life. Within a few months, his wife also became totally disabled. With both on Social Security, it became financially impossible to handle much else.

Ken had been sick for almost 2 years before we found out what had been causing so many varied and serious symptoms. After numerous doctors and years of searching, he was finally diagnosed with Myasthenia Gravis (MG) an autoimmune disease because the immune system mistakenly attacks itself. MG is an interrupted signal at the neuro-muscular place where nerve cells connect with the muscles they control.

Weakness of the eye muscles, including a drooping of his eyelid, blurred and double vision were also present. He experienced an unstable gait, changes in facial expression, difficulty in swallowing, chewing, shortness of breath, slurred speech, and weakness is the arms, hands, fingers, legs, and neck. All of these had been present after his accident and it was expected that at least some of them were accident related. Later, we found most of these symptoms were also symptoms of MG. It is a permanent, chronic, disease characterized by varying degrees of weakness of the skeletal muscles during activity that improves after rest.

Medications covered by his Medicare are used to help by suppressing the production of abnormal antibodies. Their use must be monitored because they can cause major side effects. These are generally affordable.

High-dose intravenous immune globulin (IVIG), which temporarily modifies the immune system by infusing antibodies from donated blood. The cost for this is approx. $25,000/mo. Even with insurance, this is cost prohibitive as the Co-Pay for this is $3,200+/mo. We have lost our contact for assistance with this enormous co-pay and graciously ask your help.

Another therapy, plasmapheresis, is where serum containing abnormal antibodies is removed from the blood and while cells are replaced. Such therapies may be used to help during especially difficult periods of weakness and crisis.

A crisis occurs when the muscles that control breathing weaken to the point that ventilation is inadequate, creating a medical emergency requiring a respirator. Crisis can be triggered by infection, fever, or an adverse reaction to medication. Crisis can be triggered by heat, stress, fever, infection, or an adverse reaction to medication. Luckily, Ken has not been in any crisis situations, but the thought of a respirator is just unthinkable, even temporarily.

In other words, MG is rare, so it is very hard to diagnose. MG is so rare in fact, there aren't many services for people with this disease. There aren't even enough cases for the charities to list it as a disease to be covered for assistance.

Any help that can be forwarded to us would be gratefully appreciated.
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