Alyssa Christian has her hands full. The 26-year-old is a working mother of a 3-year-old son, and copes with the unpredictable symptoms of multiple sclerosis, a disease that affects the central nervous system, disrupting communication between the brain and the body.
But the busy young woman is determined to help others in the Cayman Islands who have been diagnosed with multiple sclerosis, and has created Cayman’s first foundation to support them.
Not even a year after being diagnosed, Ms. Christian has spearheaded the MS Foundation of the Cayman Islands, an organization she hopes will spread awareness about the disease, connect MS patients in Cayman and support them by offering monetary support to help with the costly treatment of the lifelong disease.
“The more people I talk to, the more people say they know somebody who has it, which was shocking to me,” Ms. Christian said.
She said she knows at least 10 people living in the Cayman Islands who have the disease, which affects more than 2.3 million people worldwide, according to the National Multiple Sclerosis Society.
Ms. Christian said that after talking to other MS patients in the Cayman Islands, she decided a foundation was needed to connect and help those who have been diagnosed with the disease.
“I think it’s important for us to have that support and network,” Ms. Christian said.
She hopes the foundation will also improve awareness of the disease, which is not often talked about.
According to the National Multiple Sclerosis Society, the prevalence of MS can only be estimated because symptoms can be invisible, such as fatigue, pain, cognitive problems, weakness, numbness, tingling, blurred vision and heat sensitivity among many others.
The society says that many MS experts believe it is an autoimmune disease – a disease in which the immune system reacts to normally occurring antigens as if they were foreign – although that is still debated in the scientific community.
“The cause of MS is still unknown – scientists believe the disease is triggered by as-yet-unidentified environmental factor in a person who is genetically predisposed to respond,” the society said.
Diagnosis typically occurs between the ages of 20 and 50, and two to three times more women than men are diagnosed with the disease.
Multiple sclerosis is called the “snowflake disease” because no two people who have it experience it the same way.
For Ms. Christian, it started with a “crazy, blurry spot” in her eye. She just couldn’t see properly. Later, she began to experience pain and numbness throughout her body. Finally, after three-and-a-half years of trying to pinpoint what was causing her symptoms, visiting several doctors in the Cayman Islands and in the United States, the diagnosis came last August.
By that time, she said, she was well educated about the disease, since doctors had mentioned it as a possibility.
“It didn’t really hit me as a shock,” Ms. Christian said. “I was relieved because all I wanted was to know what was going on and a way forward – what do I do now?”
As a mother, she says it can be frustrating not being able to physically hold her son at times, or spend long periods of time in the hot outdoors. She hopes, though, to have a second child before beginning the injections she will take three times a week to help manage her symptoms.
“It’s not a death sentence. Yeah, your life changes, but you just kind of have to adapt and keep going,” Ms. Christian said. “I kind of just accept it as my new little friend and I just plow through because that’s all I can do. I wouldn’t let myself get depressed about it and feel sorry about myself and just not do anything – I think I’d probably feel worse. Staying active is super important, so I just do my best.”
Establishing the foundation
Now, Ms. Christian is going through the legalities of getting the foundation officially established, and she has big plans for it.
She hopes to establish a gala to be held every year in March, during MS awareness week, and create a team relay event, where teams will compete in a course with obstacles designed to mimic the symptoms of MS.
Ms. Christian said she is also in the process of setting up an Active.com page to raise money for the foundation.
“I have a new friend who was just recently diagnosed and she reached out through the foundation’s Facebook page … When I met her, she said, ‘I felt so alone. I felt that nobody else was going to have this,’ and I said, ‘No. There’s a lot of us.’”
“Friends and family are great, but unless you experience it and you have it, it’s hard to explain how it feels and what you’re going through. So to have other people to relate to is super important,” she added.
For more information, visit the MS Foundation of the Cayman Islands Facebook page at www.facebook.com/msfcayman.