“Are all those years in prison waiting for nothing? Or have they given you reserves of strength unlike ordinary men?”
Aramis to Phillippe, The Man in the Iron Mask
After years of procrastination, this website is finally up. For all the promising research people with McArdle’s Disease have read about over the past ten years, nothing has been realized in human trials. So, we’re still in a holding pattern. That’s OK, though, because those of us with McArdle’s Disease are still well off compared to many others who struggle daily with debilitating illnesses. Those of us with McArdle’s Disease are extremely lucky to carry on seemingly normal lives, to appear and behave normally. Others are not so fortunate. Ours, if we are able to educate enough people, is at worst a disease of inconvenience and at best a reminder of how fortunate some of us are.
For now, the best we can do is educate ourselves about the disease and the way the body metabolizes energy. Hopefully, this website helps people understand the disease better and helps contribute to an improvement in the quality of life for those with the disease. Indirectly, we can aspire to improve the quality of life for all of those who suffer from muscle diseases.
About the Website Author
I am a 32 year-old male with McArdle’s Disease.
I have a very rudimentary understanding of biology and biochemistry, more specifically as it pertains to energy metabolism, but it is important to realize that this is no substitute for professional medical advice so all information presented as theory on this website is to be considered in that context. Please seek the help of a professional for proper treatment of the disease, and always know that there is no substitute for education and learning everything you can that there is to know about the way your body and your muscles work. To quote GI Joe cartoon public service announcements, “…knowing is half the battle!”
About Limitations and McArdle’s Disease
Think of the limitations imposed by other medical conditions. There are individuals struggling every day in this world to simply do mundane to which even those of us with McArdle’s Disease never give a second thought. Going to the bathroom; standing up and dressing one’s self. Feeding one’s self. Being able to walk upright. Being able to perceive the world with our senses of sight and sound and smell and touch. Some people face the ultimate challenge, in that they face life with the certainty that their time is limited. No matter how despondent you may feel about the condition your muscles are in or the things you wish you could do, always think of those less fortunate than us. They are born facing much greater challenges and yet defiantly still manage to squeeze every last drop of experience, interest, enjoyment and fulfillment out of life.
Life endures, this is the way it has always been since the beginning of time. Think of that weed in your driveway or sidewalk that grew back after you sprayed it with herbicide; it’s a great metaphor. It keeps coming back. Circumstances may slow us down, but life always endures.