Rag doll

The “rag doll” syndrome | Barbados lawyer

The world only sees droopy eyelids and someone who looks “tired”, but it’s much more complicated. Juliet Prescod is aware of this because she lives with a mysterious condition called Myasthenia Gravis, better known as MG.

(sometimes called “Rag Doll” syndrome). Over the past nine years, Prescod has adapted his lifestyle to cope with a rare autoimmune disease. It can be as unique as a snowflake depending on the person with the condition.

The Barbados Advocate spoke to Prescod on the phone on Tuesday. She explained that she has ocular MG which is characterized by muscles that move the eyes and control the eyelids which are easily tired and weakened (Myasthenia Gravis Foundation). In the United States, MG disease affects 14 to 20 in 100,000 people (Healthline).

Prescod explained that she had a typical existence, a career woman interested in fitness and wellness. But one day in 2012, his life changed. She had seen her ophthalmologist and had been prescribed glasses. She realized that there was a problem because she had double vision. After several visits to specialists and tests, Prescod was diagnosed with ocular MG.

What is MG?

According to the Myasthenia Gravis Foundation of America, “the most common form of MG is a chronic autoimmune neuromuscular disease characterized by fluctuating weakness of voluntary muscle groups.”

Symptoms include weakness in the legs, neck and arms, weakness of the eye muscles (called myasthenia gravis), drooping of one or both eyelids (ptosis), blurred or double vision (diplopia), change in facial expression, difficulty swallowing, shortness of breath, and difficulty speaking (dysarthria).

The cause of MG is an error in transmission from the nerves to the muscles. Along with the disease, the thymus gland which regulates the immune system is linked to myasthenia gravis. In people with MG, this gland can be large. According to the National Institute of Neurological Disorders and Stroke, it is believed that the thymus can send the wrong instructions to developing immune cells. This can cause the immune system to attack its own cells and tissues while producing antibodies against the acetylcholine receptor. This can lead to an attack on the body. The disease is common in women under 40 and men over 60. Fifteen percent of those affected have symptoms in their eyes and throat.

For Prescod, his condition primarily affects his eyes which appear droopy to the casual observer. She told the newspaper that it can be frustrating to explain her condition and has been told repeatedly that she looks “tired” or “drowsy”.

Facing denial

Prescod confessed to The Barbados Advocate that her biggest challenge when she found out about MG was dealing with denial. She didn’t want to accept that there was a problem and she had not yet found out about the local association of people with myasthenia gravis, Myasthenia Gravis Association of Barbados (MGAB). In 2019, in The Barbados Advocate article titled ‘Education is the Key’, Professor David Corbin congratulated the association on reaching its 20th anniversary, but said there was a need for the organization to have more support and educates the public about the disease. The association was founded in 1999 as a support group. The President of the Barbados Myasthenia Gravis Association (MGAB) is Rosalind Mascoll.

Live a normal life

Prescod, who is a wife and mother, is no longer in the business world. Over the years, she has created a business and continues to build her hair salon despite the impact of COVID-19.

“I try to live a normal life. Some days are better than others, ”Prescod said.

MG’s victim reported that her eyelids drooped more and it was difficult to navigate around her. As a result, she has to make sure that the ceiling cupboards in the house are closed because her peripheral vision is poor. Prescod said she had tests on her heart and liver and the results were good. She continues to manage her condition with medication, exercise (in moderation), diet and rest. Treatment of the condition can be difficult due to the use of steroids which have the side effect of putting on weight.

Prescod stressed the importance of taking a break and that she may feel tired in the morning, but her condition may improve during the day.