EllaJean Forbes and Casandra Paul had the same feelings and thoughts when each was diagnosed with multiple sclerosis. They felt alone, with no resources and no one on St. Croix to talk to who was going through the same things.
Determined to educate and bring about awareness of autoimmune disorders, the women got together in April 2011 and organized the St. Croix Multiple Sclerosis Support Group.
“There isn’t nearly enough emphasis on MS,” said Forbes, spokesperson for the group. “Our goal is to make sure no one is in a dark and lonely space. We don’t want anyone to feel alone.”
Forbes said the group wants to educate and support people in their journey from being diagnosed to living as normal a life as possible.
“We have to be proactive about our own care,” Forbes said. She was diagnosed with the chronic disease in September 2010, and was living in fear after her diagnosis.
Paul, diagnosed in March 2000, said she didn’t want to be the only person on St. Croix with MS. She tried to start a support group shortly after diagnosis but it didn’t pan out. In 2010, after getting her master’s degree and starting her career, she spoke on local television about MS and forming a support group. Forbes called her and they organized the support group to heighten sensitivity and raise awareness about the disorder.
Multiple sclerosis is a chronic neurological autoimmune disorder that affects the central nervous system – the brain, spinal cord and optic nerve. MS affects men, women and children, but most commonly it appears in women ages 20 to 50. Forbes said stress or the environment seem to be the major triggers, but researchers don’t know for sure. There are 50 possible symptoms, including loss of vision, itching, tremors, hearing loss, vertigo, burning sensations, tingling in hands and feet and trouble swallowing.
There isn’t a cure, but drugs can stop or slow down the progression. Early detection is important, doctors say.
Annette Funicello, former Mickey Mouse Club Mouseketeer and beach movie starlet, has had multiple sclerosis for more than 20 years. She is 70-years-old and totally incapacitated. There are three degrees of MS and she has the most debilitating.
Forbes, 47 years-old, does not show any obvious signs of the condition, although she said her multi-colored toenails represent it. She tells people the crazy mixed up nail polish is a symbol of the way her life and health are going – here, there and everywhere.
“MS doesn’t define who I am, it just gives me more character,” Forbes added with a big grin. “Hell no, I’m not going to let MS get me down.”
She deals with any number of the symptoms on a daily basis, with some days better than others. Her tools for coping include meditation, prayer, medicine, a sensible diet, exercise and family support.
Forbes said there are a few pressing local issues here for the group to address, such as talking about the disease and breaking the cultural silence.
“That’s why we have the support group, so people can talk about what they’re feeling and how those around them are affected.”
West Indians are typically hush hush about health issues, she said. She can only guess why they don’t talk about illness and disease.
The support group has shared a booth with the Disability Rights Center at the Agricultural Fair, passing out information about autoimmune disorders people might have but otherwise appear healthy.
Another issue for the group is getting a U.S. Virgin Islands autoimmune disorder registry.
Forbes said she doesn’t have any idea how many people in the territory are affected by the disorders. To qualify for grants and funding for any disorder they need real numbers. She has discussed starting a registry with Sen. Sammuel Sanes.
One other issue that is important to Forbes is a program for the safe disposal of medical syringes and needles.
“We can become proactive in this instance and prevent long-term tragic outcomes,” Forbes said.
She also said it would benefit everyone to have more medical specialists and health care facilities on St. Croix. She dreams of there being a center on St. Croix serving people suffering with autoimmune diseases.
Paul added that one of the symptoms of MS is always feeling overheated. She would love to see a program on St. Croix modeled after one in Puerto Rico, in which people with MS can get air conditioning and a portion of the the electric bill taken care of with government funding.
“We just want to get the word out about autoimmune diseases, share information and support each other,” Paul said. “We are here for everyone and are inclusive.”
There are about a dozen locals involved in the group, with disorders such as lupus and rheumatoid arthritis. Anyone with autoimmune disorders and their guest can attend the meetings. The group meets from 5:30 to 7:30 p.m. on the last Monday of the month at the AARP office in Estate Diamond.
More information is available by calling Forbes at 1-340-227-4046 or Paul at 1-340-332-1482. There also is a St. Croix Multiple Sclerosis Support Group Facebook page where people can chat and make comments.
March has been designated Multiple Sclerosis Education and Awareness Month.
