PEOPLE thought she was just being lazy when she would fall asleep in class or move sluggishly on the job.

A few employers even accused her of making up excuses when she told them she had a condition known as myasthenia gravis (MG) – a chronic autoimmune neuromuscular disorder that is characterised by muscle weakness.

Because it isn't a well-known condition, Charlene Clarke has a struggle trying to get people to understand it is a real disorder which results in chronic tiredness or exhaustion.

For the first time, the 18-year-old, of Harrises, St Lucy, feels comfortable enough to talk about the condition which she has been grappling with from the age of four.

"I saw an older gentleman who had it being featured on CBC-TV's Mornin' Barbados recently and I wanted people to know that it can affect people of all ages," she told the WEEKEND NATION.

Most of her life Charlene has had to sit
on the sidelines and watch others live theirs because of the disorder. At school, she couldn't take part in sports or any physically taxing activities. It has stolen many of her dreams, including that of becoming a hairdresser. The long hours standing, a prerequisite for the job, are just not possible with her condition.

Charlene's mother, Judy Clarke, realised something was wrong when her left eyelid started to droop as a young child. After taking her to the doctor, Judy was told her daughter had this disorder she had never heard about. Charlene was placed on medication which helped but when her symptoms seemed to disappear around age 11, she stopped taking them.

For about six years, she had some semblance of a normal life – the tiredness and drooping went away –
or so it seemed.

Then last year, they resurfaced.

"It looked as though she had improved . . . .[But] the doctor said she shouldn't have come off the medication," said Judy.

Charlene realised the entire left side of her body was swollen. Her doctor prescribed three different medications, including steroids, to help her cope with the discomfort.

There is no cure, so she will have be on meds for the rest of her life.

She has the most common form of MG and symptoms can include: drooping eyelids, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing.

Charlene was hospitalised as recently as last week after having difficulty breathing and she suffered two seizures as well. She confessed she had a habit of stopping the medication when it made her feel queasy.

Fortunately, she's doing somewhat better and is on leave from her job as a cashier at Suntex bakery, Mile-and-a-Quarter, St Peter.

"I must say that the owners there are very understanding and they want me to get better before I go back out," she said, adding that she hoped others would be as understanding when they read her story.

Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness".

In the United States, it is estimated that 20 out of every 100 000 people have the disorder. It occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

To fully understand Charlene's condition, one has to understand what happens inside her body.

The voluntary muscles of the body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibres.

Nerve fibres do not actually connect with muscle fibres. There is a space between the nerve ending and muscle fibre; this space is called the neuromuscular junction.

When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. This travels across the space to the muscle fibre side of the neuromuscular junction where it attaches to many receptor sites.

The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there is as much as an 80 per cent reduction in the number of these receptor sites.

Immune system

The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site.

Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins.

For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG.

The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction.

The current treatments for MG are sufficiently effective that the outlook for most patients is bright. Although the treatments will not cure MG, most patients will have significant improvement in their muscle weakness. In some cases, MG may go into remission for a time as in Charlene's case.

There is much that can be done to treat it but still much to understand about the disorder.

l melissawickham@nationnews.com