Open Up About “Invisible” Condition to Overcome Uncertainty, Says Multiple Sclerosis Patient

UAE National Asma Al Ali Found New Freedom from Her Condition at Cleveland Clinic Abu Dhabi

Asma Al Ali, an Emirati national, wants multiple sclerosis (MS) patients across the UAE to open up about their condition to help overcome anxiety and loneliness as well as show themselves and others they are not alone.

Her call to action comes ahead of World MS Day on May 30. “I was diagnosed with MS nine years ago and since then, I have tried not to think about it and just live my life. Even so, living with MS can get lonely or scary sometimes and being able to talk about it with someone who understands can really help,” says the patient of Cleveland Clinic Abu Dhabi, an integral part of Mubadala Health.

“There is so much openness about diabetes or blood pressure, but when it comes to MS, it’s an ‘invisible disease’ which makes it really hard to meet people who have it or are willing to talk about it.” Diagnosed with multiple sclerosis in 2012, Asma’s journey began with vision problems in her left eye. What started as a slight blur quickly progressed to extremely cloudy vision. Concerned, she visited a local hospital in Dubai, where doctors performed an MRI that revealed spots on her brain consistent with multiple sclerosis. 

“When my doctor first told me I had MS, I didn’t know what to think. I read about it online but decided not to take what I read to heart. Everything happens for a reason and I thought that I would be fine with medication. I try not to think about how the disease might progress because that can be very scary and I don’t want to trigger any anxiety. There’s a TV show I heard about with a character who keeps a diary in case her MS makes her lose her memory. I can’t bring myself to watch it as that’s my biggest fear, not remembering my life properly,” says Asma. 

Over the next few years, Asma followed up with her doctors regularly to monitor the progression of her disease. Although she experienced very few symptoms, her scans showed that she was developing more areas of inflammation in her brain and on her spinal cord. In December 2020, she decided to visit Cleveland Clinic Abu Dhabi for a second opinion. 

“When Asma first walked into my office, we had a long chat not only about her MS but also about her life, plans for the future, her hopes and anxieties. Really everything a young person like her would be thinking about. Despite the medication she was on, she had ongoing spots of inflammation in her brain. After discussing her options with her, we decided on a new medication we would administer here every six months,” says Dr. Anu Jacob, a neurologist and director of the multiple sclerosis department at Cleveland Clinic Abu Dhabi’s Neurological Institute.

Moving from a medication she took twice daily to infusions twice a year transformed Asma’s life and approach to her care.

“The pills I was taking had very strict timings and quite bad side effects sometimes. I was always planning when to wake up and eat around having to take my pills and sometimes I would forget. It really reminds you that you’re living with this disease. Not having to deal with that anymore really helps me focus on my life and not MS,” says Asma.

After changing medication and receiving her first infusion at the hospital, Asma continued to visit for follow-ups with her care team and to undergo MRI scans to monitor her inflammation. Over the next few months, subsequent scans showed her condition had stabilized.

“Although Asma had been doing well with very few symptoms over the years, with MS it’s common to have inflammation in areas of the brain or spinal cord which produces no symptoms and patients don’t notice. Without proper monitoring, these unnoticed spots can build up and lead to disability over time – usually many years. When I see Asma, I know that if we don’t intervene with the right course of medication now, in 15 years her situation could be very different. Knowing that and wanting to prevent it is what guides my treatment for her,” continues Dr. Jacob. 

Looking to the future, Asma is keen to meet other people in the UAE living with MS to share experiences and build a community.

“Meeting Dr. Jacob was amazing; I really felt like he was the first doctor that involved me in my care. Being consulted and having someone to talk to has really helped me and I feel much more supported. I want to meet other people with MS, I’ve only ever met one other patient so far and I really think that if we use our voices, share our experiences, and talk about this condition, we can help each other,” concludes Asma. 

Cleveland Clinic Abu Dhabi will soon be launching a new website in English and Arabic that offers MS patients and their families information and advice in simple and easy-to-understand language on topics including symptoms, diagnosis, treatments, and lifestyle as well as exercise and diet. The site also provides support materials and curated external links for physicians and the wider MS community in the UAE.

For more information or to book an appointment at Cleveland Clinic Abu Dhabi, call 800 8 CCAD (2223) visit www.clevelandclinicabudhabi.ae or download the Cleveland Clinic Abu Dhabi app.