Healthy Living looks at MG, a rare autoimmune disease

This June is a special awareness month for a disease you’ve probably never heard about. It’s called Myasthenia Gravis (MG), a very rare auto-immune disease causing muscle weakness which affects all ethnic groups and both genders. It can occur at any age but is most common in young adult women and older men. While little conversation takes place about this disease, there are Belizeans who are living with MG. Tonight on Healthy Living, I sit down with one patient who has decided to take a pro-active role and starting a support group for myasthenic patients.

Nicola Longsworth, Myasthenic Patient & Founder of Support Group.

“At the age of three, I was a normal child and I was doing everything that a three year old should be doing and then several things changed.”

Marleni Cuellar, Reporting
Nicola Longsworth was diagnosed with a rare auto immune disease as a child. It was the attentiveness of her parents that made them realize that something was wrong.

Nicola Longsworth

“My eyes, crossing, one eye would be looking straight the other would be looking in the opposite direction. I started to become very fatigued, very tired all the time. I would be having dinner and my head would fall into my food, and I would also fall off the chair.”

Her parents proceeded to follow up with numerous medical visits and eventually Nicola was diagnosed with Myasthenia Gravis or “grave muscle weakness.” In this autoimmune disease, the nerve signals are attacked and damaged which causes a breakdown between nerves and muscles and muscles then begin to tire and weaken easily.

Nicola Longsworth

Nicola Longsworth

“The body simply fights against itself. The antibodies fight against your body. It’s almost like it becomes a stranger.  The symptoms there are times that you cannot breathe, there are some situations where you can have difficulty breathing and need to go on life support. That’s the extreme case. There are cases where you need to do surgery on your thymus gland and those are the glands that are known to produce these antibodies.”

The surgery is one treatment option and others can rely on just medication. Other symptoms of myasthenia may include eye muscle weakness, eyelid drooping, blurry or double vision, difficulty in swallowing, shortness of breath, impaired speech, and weakness in the arms, hands, legs, and neck.  With these varying symptoms, it can be difficult to diagnose especially with such limited awareness.

Nicola Longsworth

“It was a bit traumatizing because as a child I couldn’t understand why I kept feeling so tired. I couldn’t understand why I had to take medication so frequently. Three sometimes four times a day. My mom would go to school to administer medication to me and I just couldn’t understand why.”

Nicola has been in remission since age seven, but faced a fragile time during her first pregnancy. She now only suffers from bouts of fatigue which is the only time she requires medication. She’s now aiming to start a support group for patients and what better time that during Myasthenia Gravis awareness month.

Nicola Longsworth

“I wanted to form this support group because it is very important for us in Belize. I clearly remember, I heard on the news a child died of myasthenia. That touched me deeply.  Another instance I was at the drug store buying medication and a woman came in to purchase mestinon and I asked her do you have myasthenia? She said no: my husband does and he is doing so bad. I felt for her. I’m able to do everything and he is in this crisis. It’s important for other patients in Belize to know I’m not the only one in Belize with Mysethenia Gravis because honestly I thought I was the only one.”

There is no cure for myasthenia but patients can have periods of remission. The group is aimed at providing support to patients and building awareness about the disease.

If you would like to help in the formation of the support group, contact Nicola at nicolabze@csabelize.com or 227-7396.