Abu Dhabi: Better awareness on multiple sclerosis, one of the most common nervous diseases, may help patients feel less embarrassed to ask for help, a brave Emirati multiple sclerosis (MS) warrior has said on the occasion of MS Awareness Month.
Maitha Sultan Abri, 21, was diagnosed with the condition two years ago, and has had to learn how to live and thrive with it. Prior to it, she had never even heard about it, and that’s something she wants to change for other members of the community.
“When I was initially diagnosed, a lot of people around me appeared alarmed and this was scary. It was only over time that I learnt that multiple sclerosis was not as bad as I had been led to believe and that management simply required certain lifestyle changes, much like any other condition,” Abri told Gulf News.
“In fact, my diagnosis has simply empowered me. I even got a job as an administrator for a while and I never thought I would be working before I had even graduated from university,” the International Affairs student said.
The month of March is observed globally as MS Awareness Month and it serves as a time for patients, families and health-care professionals to share their experiences and knowledge about the degenerative autoimmune disease.
What is multiple sclerosis?
In MS patients, the immune system attacks the protective sheath known as myelin that covers nerve fibres. This causes communication problems between the brain and the rest of the body. Eventually, the disease can cause permanent damage or deterioration of the nervous system.
MS is known to be twice as common among women than men and it is also more prevalent in people who have a family history of the condition. Common symptoms include tingling, fatigue, vision problems, numbness, slurred speech and difficulty in gait and movement.
There is, as yet, no cure for MS. But recent advances in medicine can modify the course of the disease and slow its progression.
Abri remembers her first taste of the disease as a numbness in her tongue that made speech very uncomfortable. “The right side of my face also felt numb and my legs felt heavy, so I could not walk. As soon as I saw a specialist in Abu Dhabi, he knew it was MS,” she said.
Following the diagnosis, Abri was hospitalised for a few weeks. “My doctors handed me informative material on MS, and it was only then, when I saw a picture of a patient in a wheelchair, that I realised that the condition could be serious,” she said.
After two weeks, Abri was moved to a rehabilitation hospital to help her learn to live with the condition. There, she underwent speech, occupational and physical therapy. “I have always lived with asthma and Type 1 diabetes, so the diet-related lifestyle changes did not seem difficult. But I had to learn to adapt to MS. For instance, I love to drive, but I had to understand that MS can make it difficult and that activities that involve a lot of walking can prove challenging. I also have to avoid multitasking, which means I can no longer sit for multiple exams on one day, as I was once able to,” Abri said.
Determined to thrive, Abri learned to focus while talking so that her speech was clear to others, even when her tongue felt numb. She also learned to walk cautiously in order to avoid tripping, placing one foot carefully in front of the other.
But the hardest part for Abri was understanding that she did not need to be independent and that she could ask for help.
“I was used to taking care of my younger siblings and running errands for my mother. I would avoid asking for help, but this did me no favours. So I had to learn to ask for help and sometimes this can involve seeking assistance for simple tasks such as eating or climbing the stairs,” she said.
Symptoms can also vary from day to day and knowing this can help loved ones support and understand a patient better. “At the beginning, I would be stubborn and fight my fatigue. But this always resulted in me having a harder time the next day,” Abri said, adding that she eventually learnt to accept and adjust to her daily challenges.
Ask for help
Sharing her learnings with other MS patients, she urged them to ask for help as and when needed. “Do not be embarrassed to ask for help; asking for help is good for you and it is good for your loved ones. And surround yourself with positive people who empower you,” Abri said.
There are no reliable figures on the nationwide prevalence of MS in the UAE, but it is believed that more than 4,000 people are currently living with the condition. A 2019 study by researchers at Sheikh Khalifa Medical City (SKMC) concluded that the disorder affects about 64 per 100,000 people in the UAE, nearly twice the global prevalence of 35.9 per 100,000 population.
The disease is initially known to have a relapsing-remitting course and many patients can be symptom-free during a period of remission. Patients therefore require a degree of flexibility and understanding to deal with relapses.
Over time, the condition can become progressive, but the rate of progression varies greatly among patients.
Early intervention and rehab
Dr Khalid Anwar, physical medicine and rehabilitation consultant at Amana Medical and Rehabilitation Hospital, advised early intervention for MS patients.
“There are today a range of disease-modifying drugs, as well as others that help treat symptoms. So even though MS is a challenging, lifelong disease, drugs and therapeutic interventions can help delay its progression. However, patients need to start treatment early and for this, any neurological symptom must be investigated early,” he advised.
He therefore urged people not to ignore neurological symptoms such as pain, weakness, difficulty balancing, vision and hearing difficulties — even if they are temporary. “In MS, symptoms can appear and disappear after a while and patients can end up ignoring them. But my advice would be to have any symptom investigated so that the disease can be diagnosed and treated early. In addition, rehabilitation can help patients have a much better quality of life,” Dr Anwar added.