The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the body’s involuntary muscles and extreme fatigue.

For most children with this neurological disorder, their symptoms are mild enough that they are rarely diagnosed in early childhood, but for infants with a more severe case, they usually have difficulty rolling over on schedule, and appear to be “floppy.” If your child has congenital myasthenia gravis, here are a few things to keep in mind:

• The severity of the illness is variable. It may be a minor inconvenience or it may entail disabling weakness. Do not assume the worst when it comes to your child’s diagnoses.
• People with all forms of this illness live long lives. There is a senior veteran making news headlines because of coverage of his myasthenia gravis medications at the VA hospital. People of all ages live well with this illness.
• Remember that everything in life must be done one step at a time. You don’t have to do or know everything all at once.

Whether a person has congenital myasthenia gravis, or develops myasthenia gravis later in life, their prognosis is good with care.

There are several factors that can ease both the symptoms and isolation felt with a rare illness. First, understand that a good diet and healthy lifestyle are more important than ever for your child to thrive. Second, always remember that you and your child do not have to do this alone. Join a support group, talk to other parents who are going through the same thing, and meet other children who have the same illness. It can bring a lot of hope and perspective.

If you would like more information about congenital myasthenia gravis, contact the Myasthenia Gravis Foundation of America!