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Deanne Phillips, the youngest member of the Myasthenia Gravis Association of Barbados.

Greater awareness needed about MG

The month of June has been designated as Myasthenia Gravis Awareness Month and as such, the Myasthenia Gravis Association of Barbados is doing its best to raise awareness about the chronic autoimmune neuromuscular disease, which affects some Barbadians.
Twenty-eight year old Deanne Phillips, the youngest member of the Myasthenia Gravis Association of Barbados, who has been diagnosed with the condition, spoke to The Barbados Advocate about efforts to raise awareness, to help persons better understand the battles persons with myasthenia gravis face, how they try to cope and what more can be done to assist those in the Association.

According to the Myasthenia Gravis Foundation of America, Myasthenia Gravis (MG) is a chronic autoimmune neuromuscular disorder, characterised by fluctuating weakness of the voluntary muscle groups. The Mayo Clinic meanwhile points out that there’s no known cure for myasthenia gravis, but treatment can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing. Though this disease can affect people of any age, it’s more common in women younger than 40 and in men older than 60.

Deanne explains, “To put it simply, it means grave muscle weakness, it affects voluntary muscle. So we get tired quickly. Simple things like exercise or going up and down stairs, those kinds of things exacerbate the condition, so we have to be careful and watch what we do”.

“The number of persons that we know with myasthenia gravis is small, because a lot of people can live with the condition, but may not know that they have it. In terms of the symptoms of myasthenia gravis, if you are feeling tired, if you notice that your eye is drooping, if you notice that you are having problems swallowing. Those are the main symptoms that you look for. It doesn’t mean automatically that you have the condition, it can be something else going on, but if you experience those symptoms, you should definitely get it checked out, to make sure that everything is OK,” she pointed out.

Deanne meanwhile explained that she started out with “ocular myasthenia gravis”, a form of myasthenia gravis in which the muscles that move the eyes and control the eyelids are easily fatigued and weakened and then it later
progressed to the general form.

Pointing out that catching a simple cold can at times see her being hospitalised due to a weakened immune system, Deanna however noted that once persons understand their triggers, they can better cope.

“It affects everyone differently. I used to like to be out for Crop Over, but with the diagnosis, I am now unable to do that, because it takes a while to recover. Something as simple as a cold can actually trigger a myasthenic crisis, which is when the myasthenia acts up and you get problems swallowing, you get problems breathing or you can feel really weak, and you may need to be hospitalised,” she said.

“But I can still go out and have fun. I can still hold down a job, though there are times when it gets tedious, because it is hard on the body and sometimes it takes you longer to recover [from sickness] than it takes a normal person, if your immune system is compromised,” Deanne added.

Noting that she was recently diagnosed with arthritis in her knees at such a young age, she noted this as an additional complication. However, she is determined to live life to the fullest and to give of her best in all spheres of endeavour.

For the month of June, she is asking that persons wear teal, the international colour designated for myasthenia gravis, as the local Association makes the switch from its previous choice of emerald green. Barbadians can use the social media
platform to show off their attire and assist in raising awareness as well.

Deanne Phillips is also reaching out to corporate Barbados for assistance at the level of the Myasthenia Gravis Association, noting that with adequate funding, some members would be able to travel for conferences to enhance the Association’s effectiveness and do more outreach in Barbados.

Acknowledging the strong support of family and friends to date, Deanne however wants to see persons living with any disability, treated better and given more opportunities to excel.

“I find that a lot of the time people with autoimmune conditions are seen as people who are disabled or disadvantaged, because we are sick a lot. But what people don’t realise is that when we are actually there, we give a whole lot more, because we feel as if we have to prove ourselves to people. So then we come and we give of our best,” she noted.

“I have been a victim of discrimination. I would be the perfect candidate for a job, but if upfront I say have myasthenia gravis, employers don’t want to hire you anymore. I however wish some people would give us more of a chance. Once we have everything under control, we would actually be very valuable employees for the organisation,” Deanne concluded.

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