Desperate measures

Recently I have seen something that bothers me.  As with many of us living with Kennedy’s Disease, the older we get the more desperate we become.  Many are willing to try almost anything to stall or reverse the progression of this disorder.  In a couple of chat rooms this summer, a few have commented on their frustration with the research process and the slower than expected progress in finding a treatment (e.g., the years it takes to move from test tube, to fruit fly, to mouse models, to human clinical trials).  A couple of recent comments and an email reflect a few others are using experimental drugs or drugs that are/were being tested in a clinical trial without a doctor’s direct supervision.  Recently a man discussed his use of several different vitamins, medications and drugs (all at one time) in an attempt to slow the progression.  This could be especially hazardous because certain medications might not be compatible and could cause other problems.

I understand this frustration and the desire to try almost anything ... just in case it might help.  And, yes, I would love to see something become available that could improve the quality of my life.  On the other hand, many of these treatments are expensive and might do more harm, especially when we do not know a safe dosage.  Furthermore, without adequate supervision and documentation by a qualified doctor, if a treatment is found to be effective it will not be reported so that others might benefit.

The KDA has a slogans, “Working together to find a cure ... if not for this generation, than for our children and grandchildren.”  I have a daughter that is a carrier.  She has two children.  I would do almost anything if they would not have to live their lives under the shadow of this genetic mutation.  I still have hope that there will be a treatment for this disease ... if not in my lifetime, than at least in theirs.

If you are experimenting with potential treatments for Kennedy's Disease, please bring your doctor into the process.  He (or she) is more qualified to review with you possible drug interactions, dosages, and potential side effects.