In March of every year, the world observes Multiple Sclerosis (MS) Awareness Month, a time to spread awareness about the chronic disease through public campaigns and insightful information from health experts and survivors sharing their journey.

This disease is classified by many health officials as an autoimmune disease whereby the body’s immune system preys on the myelin in the body, an insulating layer around the nerves which allows electrical impulses to the transmitted quickly along the nerve cells.

Growing up with multiple sclerosis from a tender age, Germaine Barrett shared his journey living with the chronic disease with Our Today and how it has impacted him not just physically but mentally.

“When I was younger it [multiple sclerosis] used to cause me a lot of challenges. It still does but I suppose, as I get older, I kinda become used to it. The challenge back then was when I was going to school and had to go about with my bag on my back and walk long distances, I would get tired very easily. I would also suffer a lot of pain, I could not be as active as other children and that would bother me quite a lot,” he explained.

He also shared that MS affected his lung capacity which often resulted in dyspnea or shortness of breath. The 34-year-old explained that he was affected by this condition throughout his youthful years and into adulthood.

“I still get tired very easily, maybe now more than before. I have severe back pains if I walk or exert myself and it’s just constantly uncomfortable,” Barrett expressed.

Psychological challenge

Living with this autoimmune disease can have several challenges, not just because of the symptoms associated with the disease but the psychological impact of constantly feeling different because of one’s physical appearance.

Germaine shared that, during his younger years, he was often teased about his deformed back by the young men in his community.

“They would call me ‘humpy’ or ‘Sir humpalot’ or ‘Quasimodo’. I use to get all sorts of names and that would affect me. I got some amount of teasing in primary and high school school as well, which made me feel really bad and not having a family structure that you could go to your mother, father or aunty to share the challenge that you are going through mentally, I had to just kinda bottle it all up and trod along through life,” he explained.

He also expressed that there were days when he would look in the mirror and feel disgusted by his physical appearance.

“Of course, there is the psychological/mental challenge of just looking at yourself in the mirror and thinking, ‘Oh my gosh, you look so disgusting’. You look weird and just never wanting to be seen with your shirt off or always just being body conscious,” he said.

Treatment

At the age of 18, Barrett sought to have surgery done to correct his medical condition, Kyphoscoliosis, which is defined by the National Library of Medicine as a disease of the thoracolumbar spine in which normal curvature is excessively deviated in multiple planes. However, the condition had reached an advanced stage that would place him at risk of becoming crippled or even dying.

“My case was advanced to a severe state that I was told that if I were to do surgery, there is a high probability that I would be paralysed for life or I could even die because I had other complications as well. I was so heart broken, but then, in a kinda strange way, I found the strength from that disappointing experience to carry on with life,” he said.

The 34-year-old is also affected by Marfan syndrome, a genetic disorder that affects the body’s connective tissue that maintains the structure of the body and supports the organs.

“In my case, it [Marfan syndrome] presents a whole range of issues where sometimes my joints hurt. My fingers are very long and spidery, I am now completely blind and that has been quite a traumatic experience for me. I am now blind for one year,” he said.

Counting his blessings as he goes along through life, Barrett explained that persons living with Marfan syndrome usually have a life expectancy of 18 years.

Barrett, who is now lending his voice as a sufferer of multiple sclerosis, is encouraging other persons living with the condition to share their journey to bring awareness to others who may be suffering from the condition to aid in early treatment.

He said that “persons should be looking at their children, the point at which you see a curve in the spine of your child, go to the doctor and get medical treatment. Don’t stay at the house and say ‘Boy, you know him grow it out. Get medical intervention and, if surgery is required, get that done because if you begin to wait it gets far worse the older the child gets.”

He added: “Have hope that, despite the challenges of your life, as someone suffering from sclerosis, there is the possibility that you can use it as an encouragement for you to achieve greater things in your life. People will not see you and sclerosis if you show them who you are inside. If you show them that you are a great person with an amazing personality, they will see that and they will look beyond your physicality and see your awesome personality,” he added.

He also urges sufferers of sclerosis to use their challenges as a motivation to achieve great things in life.

Defying the odds

Barrett, a radio host and the president/CEO of the Jamaican Association for Debating and Empowerment (JADE) Limited, explained that despite this disease he has grown to become a lover of knowledge, constantly enriching his mental capacity by reading and watching documentaries.

“Having sclerosis does not impact my mental functioning, so I’m sharp. I read a lot, I consume a lot of information. I love knowledge, I love information, I am so in love with information,” he exclaimed.

He also expressed that he has a deep passion for youth development and has devoted a large part of his life to that cause by empowering youths through debating, public speaking and critical thinking.