Category Archives: McArdle’s Disease Information

Children with McArdle’s Disease are at significant disadvantage.  Children aren’t able to articulate themselves as well as adults and their symptoms are easily confused with being lazy or stubborn or simply uncooperative.  Children who are lagging behind because they are experiencing painful muscle failure from McArdle’s Disease may find their discomfort compounded by scolding or teasing from classmates or teachers. At some point, all children endure some form of teasing from friends or siblings or classmates.  However, those children more vulnerable to teasing for whatever reason – small stature, weight issues, appearance, or anything else – may be singled out, and excessive attention of this kind is unhealthy.

It is incumbent upon grade school physical education teachers, nurses, pediatricians and anyone else in a position of relevant authority to educate themselves on McArdle’s Disease and other conditions whose symptoms are easily mistaken for behavior issues or lack of cooperation.  Even the most observant teacher cannot tell simply by looking at a child whether or not their muscles work properly, and the way the symptoms of McArdle’s Disease manifest is deceptively similar to a simple lack of physical condition or laziness.

How to Know if a Child Has McArdle’s Disease

Here are some things you may observe:

  • Does the child complain of weariness on even moderately long walks?
  • Do smaller children complain of weariness and ask to be carried?
  • Do hills, stair cases, and other inclines elicit the responses above?
  • Does the child complain of “pain” in the legs in such incidents?
  • Does the child have difficulty performing even an average number of sit-ups or push-ups, even in a modified form?
  • Does the child have difficulty or otherwise avoid running laps in gym class?
  • Does the child demonstrate, in general, a lack of physical fitness that contradicts an otherwise healthy appearance, assuming they are not overweight?
  • Has the child ever complained of or demonstrated unusual muscle stiffness and cramping?
Any of these observations are worth investigating.  Again – children have only responsible adults as their advocates, and cannot reasonably be expected to know that something is wrong with them that they cannot help.  
The symptoms of McArdle’s Disease are subtle but specific.  Your attention and action can mean the difference between years of physical and emotional discomfort, and a more normal childhood.  If you are a physical education teacher who would like to know more about the disease, please contact us for information.

As of 2008, the only realistic treatment for McArdle’s Disease is – somewhat ironically – exercise.

The physical (and emotional) discomfort associated with failure episodes characteristic of McArdle’s Disease often pushes people with the disease towards a sedentary life style.  If you consume sugary snacks or beverages as a way to try to up your blood sugar to power through episodes, you probably have it worse because the body ultimately outsmarts itself and interprets those snacks as “break time” and shuts your energy-creating enzymes down essentially, making you even more tired (this is not pseudo-science, but it IS an idiosyncratic characterization…there’s a difference.)

The reason sedentary people with McArdle’s Disease have so much discomfort exercising is the same reason any normal sedentary person does.  Their body has adjusted to just sitting around, and not having demands placed on it.  When you get up and push your body beyond the limits of what it is chemically prepared and equipped to do, you will feel initial resistance.  This is the same for all people, regardless of whether or not they have McArdle’s….only, with those of us who have the disease, this threshold is reached much quicker.

The way to effectively manage the disease is with diligence and patience and caution and perseverance.  There is in fact plenty of empirical data supporting the notion of a “second wind” phenomenon that people with McArdle’s disease experience following very careful, low-impact periods of warm-up exercise such as walking on reasonably flat ground for sustained periods of time.  Such folks are by no means “over” the symptoms, but they are able to walk almost indefinitely without experiencing failure symptoms.  It is in this “golden” period, following the warm up, that individuals with McArdle’s Disease are enjoying the normal benefits of exercise.

The secondary benefit of this is that, to some degree, their large muscle groups are now behaving somewhat like a normal person’s.  Blood circulation increases, the heart rate is up, and energy metabolism is occuring at a fast enough rate to sustain some physical activity.  It is in this “golden” period that an individual with McArdle’s disease MAY, depending upon their physical state of conditioning, be able to:

  • Play sand volleyball or moderately-paced basketball or soccer
  • Dance
  • Perform outdoor labor
  • Ride a bike up moderate or short inclines
  • Hike up and down reasonably large hills without failure
  • Swim (safely)
  • Paddle a canoe or kayak
  • Possibly even jog

It all depends on the individual.  Just like every other physical trait like hair (straight, or curly?), skin color (light or dark?), or height, how your body metabolizes energy and oxygen and how it reacts chemically to exercise is really inherently genetic and different from person to person.  So, know your limits, but by all means to carefully and diligently push your limits because this is how anyone – McArdle’s Disease or not – makes gains.

Keeping your body healthy is a little trickier with McArdle’s Disease, but the patience you are forced to employ in order to get exercise is something you will benefit from.  That’s more or less universal for all people with and without the disease.

Best of luck!

By and large, medical professionals know little about McArdle’s Disease simply because it’s quite rare.  Lately, more and more physicians seem to have had some academic exposure to the topic of muscle metabolism disorders, but it’s still quite new to everyone unfortunately.

It’s safe to assume that your average grade school physical education teacher is less familiar with McArdle’s Disease.

P.E. teachers are uniquely positioned to have a profound impact on the quality of life of people who suffer from phenotypically “quiet” diseases like McArdle’s Disease, diseases whose symptoms aren’t obvious nor are they an immediate cause for alarm.  It’s easy for a P.E. teacher to simply dismiss a child who appears healthy but cannot run the mile as “lazy” or “out of shape.”  In the rare instances that additional exercises are punitively awarded for lack of performance, this makes the problem a lot worse.

The physical discomfort someone with McArdle’s Disease feels while subjecting their body to exercises they do not have the chemical machinery to perform may be mild compared to the feelings of embarrassment and isolation they may encounter if they are summarily characterized as “unsatisfactory” on physical fitness evaluations.  This, on a chronic basis.

One of the goals of this website is to educate every gradeschool P.E. teacher in the world about this hard-to-spot but easy-to-accommodate condition.