About

“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.

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8 thoughts on “About

  1. Tammy

    I am a 40-year-old mother of 2 and I would like to know what type of diet and exercise would be a healthy regiment for me to lose weight. You see before my diagnoses of McArdle’s I was on 60mg of Prednisone a day for over a year and restricted from doing basically everything. In that years time I became extremely overweight (300lbs) and now I am having difficulty with my blood sugar levels. I have seen many dietitians and all are afraid to give me any suggestions because they are unfamiliar with this disease. Recently I had been to a Dr. who wants to put me on insulin and doesn’t realize that sometimes my sugar drops below 60 because of the McArdle’s. I have no idea how my body works so I am at a complete loss and I don’t want to injure myself. I just want to be able to live again. I have spoken with my Dr. and he suggested I try to speak with others diagnosed with McArdle’s and maybe get and idea of what works for them, he says he can only tell me what they may feel or what to try but they “you” can actually tell me what you do and how you feel. My Dr. has helped me actually saved me because I had been through at least 9 different Dr.’s and countless procedures and tests. I was ready to give up until he said he wasn’t giving up and finally found what was wrong. I see him more than my primary care Dr. Any info you may have for my Dr. and I would be greatly appreciated.

    Reply
  2. Site Admin Post author

    Hello Tammy – I’m glad you’ve been diagnosed (no more mystery) and have found the site. The more you know about McArdle’s disease and the body, the better off you are. Nothing you find on this website, as the disclaimer indicates, can be construed as medical advice. Seek the guidance and consent of your physician before you make any significant changes to your diet and exercise habits.

    I can tell you that there is also a Facebook group for the disease, and you may also find more active discussions there.

    Otherwise, I can say that with few exceptions most people whom I encounter with the disease are better able to manage the symptoms with careful but diligent exercise and with a good diet. Exercises to improve strength and circulation may improve the way you feel, but it is up to your physician to determine what is practical and what is realistic for you, as all people are different.

    Read some of the articles on this website in the meanwhile, and ask questions here and on the Facebook McArdle’s disease group. Welcome & good luck -

    Reply
  3. Rahul

    I also believe I am suffering from some muscular disease, but not sure if it is McArdle although symptoms look almost same. I get tired comparatively early than my friends whenever we walk or play. After some exhaustion I notice dark brown urine. I also feel drain out daily when I have to sit in office for long time. I got myself examined many times but doctors think its just delusion of my mind. I happened to see this site, and sounds very helpful after reading people’s experience as they match with mine. There are certain other problems I see, can you please help me if they are same with you or occur due to McArdle disease?

    1. Improper body alignment, body tilt downwards, giving S curve shape to body.(Spongy body not muscular)
    2. Is it only possible in women? I am 26 yrs old male feeling the same for a long time
    3. Although exercise does not totally drain me out, but after exercising I feel stiffness in body.

    In case my symptoms lead to some other disease, you are aware of please help letting me know thanks.

    Reply
  4. Site Admin Post author

    Rahul, you should seek a physician who specializes in neuromuscular disease. The symptoms you described may be caused by any number of conditions. Click on the link “Experts on McArdle’s Disease” to find doctors in the U.S. familiar with muscle disease. Otherwise, there is a link for the UK Association for GSD on the righthand side of this website. Other site contributors may know more about qualified physicians who may help you in other parts of the world, so feel free to post again. Best of luck.

    Reply
  5. Franco

    I am a patient5 with MacArdle disease. I live in Italy ,I wish to know where in U.S.A. I can go for a proper chek up of my condition. Thank you very much for your help

    Reply
  6. Richard

    I am 64 year old male with congenital mcardles….under control pretty well….but suffered a mild heart attack on Dec 27,2010, which came as complete surprise…because no family history, non smoker, no drinking, medium LDL, not overweight…does anyone know of any link between Mcardles and heart disease?

    Reply
  7. Glenn Foot

    Hello my name is Glenn I live in Adelaide Australia, I am a 40 year old male and was diagnosed with Mcardles at 18. I have been through everything that all the other sufferers seem to go through. The misdiagnosis the constant ridicule at school the embarrassment, not being able to do all the things I have wanted to do. I have always loved sport and was very skillful at most things I tried I could just never maintain the stamina and therefore was always left out.
    Anyway I wnated to know if anyone can tell me is it possible for my children to have it. my son who is 8 now is showing some of the same signs I did at his age. Before I subjected him to blood tests and a muscle biopsy etc I thought someone may be able to direct me to something that may hold the answer or answer me directly. Thanks

    Reply

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