Children with McArdle’s Disease

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.

4 thoughts on “Children with McArdle’s Disease

  1. Mario

    Hi Alexandra.

    My name is Nelia. My husband is Mario. I am from Terceira and my husband is from Brasil. We live in California. My husbad was born with this disorder and was diagnosed in 1995. He is 44 years old. When my husband was diagnosed with the disorder that was our concern if our son could also be carrying the disorder. The doctor explained to us that for him to have it I also would have to have the disorder (since it is a genetic disorder). Our son is now 20 years old has no signs of the disorder and is a very healthy young man. You need to check your CK level very regularly because if it is high it can damage your kidneys. Do your parents have it? It is interesting that your brother and sister have it as well (both your parents must carry the same gene). My husband is the youngest of 8 and that we know of none of his siblings have it.

    Please keep in touch I would like to know more about you.

    Obrigado por compartir tua historia. Assim nos podemos ajudar uns aos otros. Nos nao cunhecemos ninguem com esses problemas musculares.

    Nelia

    Reply
  2. Alexandra Maldonado

    I live in Portugal and I,ve been diagnosed with Mcardle’s since I was a child as well as my brother and sister. I have two daughters (3 and 6 years) who have no symptoms generaly associated with the disease but I would like to know if there is such a thing as a silent disease: I don’t know if I’ll be able to explain but what I want to know is if it is possible for them to have certain characteristics such as vey develloped muscles or other complications, aldo their father doesn’t have the disease and therefore they also don’t, but they have my gene with it. Here in Portugal this would be called “portadoras da doença” (carriers). If someone has some information on the subject please reply.

    Reply
  3. Alexandra Maldonado

    I live in Portugal and I,ve been diasgnosed with Mcardle’s since I was a child as well as my brother and sister. I have two daughters (3 and 6 years) who have no symptoms generaly associated with the disease but I would like to know if there is such a thing as a silent disease: I don,t know if I’ll be able to explain but what I want to know is if it is possible for them to have certain characteristics such as vey develloped muscles or other complications, aldo their father doesn’t have the disease and therefore they also don’t but they have my gene with it. Here in Portugal this would be called “portadoras” da doença. If someone has some information on the subject please reply.

    Reply
  4. Pingback: Adult-Onset McArdle's Disease - Is There Such a Thing? | McArdlesDisease.org

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