McArdlesDisease.org

Life with McArdle’s Disease

Life with McArdle’s disease has some inherent challenges. The condition has historically been misdiagnosed as poor conditioning or psychosis, compounding the physical issues of the disease. Children with McArdle’s disease participating in gym class or athletics may find themselves attempting activities their bodies simply weren’t equipped to undertake.

Most people with McArdle’s disease develop a variety of coping mechanisms growing up, through adolescence into adulthood, that allow them to avoid much of the physical and emotional discomfort associated with McArdle’s disease. Some avoid activities they know will give them trouble, and find alternative ways to be active within the scope of what they know their bodies can handle. It is important that individuals with McArdle’s realize their limitations for their own safety, while still endeavoring to remain active and healthy.

People with McArdle’s disease may experience failure episodes and muscle injury without any warning, even when using caution in strenuous activities. Sometimes these episodes require a trip to the hospital. It can be as simple as intravenous saline and a urinalysis, or it could be weeks of hospitalization. The frequency of these injury episodes is controlled by a number of different factors; occupation, diet, cardiovascular conditioning, and more. The more aware of one’s own limits an individual with McArdle’s disease is, the less likely they are to experience injury.

A “second wind” phenomenon has been clinically observed in which people with McArdle’s disease are able to maintain moderate physical activity such as jogging or walking after a warm-up period, assuming they do not experience hypoglycemia. This warm-up may also reduce the risk of injury to the affected muscle groups through increased circulation, heart rate, and hormonal factors.

People with McArdle’s disease who are middle-aged or older may be at increased risk for injury, but it is not clear whether this is simply the natural result of decreased activity and aging, or if it is indeed specific to McArdle’s disease. There are mixed reports about the progression of McArdle’s disease symptoms through adulthood, and the medical community would benefit from more clinical studies on the effects of McArdle’s disease throughout the life span.

One thing that is certain is that individuals with McArdle’s disease for the most part seem very able to live active and healthy lives, and continue participate in all kinds of physical activities.