How a 26-year-old Sudanese expat lives with Multiple Sclerosis in Dubai
There’s more to life than the go-go-go, she says ahead of World Multiple Sclerosis Day
Dubai: Ahead of World Multiple Sclerosis (MS) Day on May 30, a Dubai-based Sudanese expat, just 26, has shared her journey of how she has been coping with a “shock diagnosis” of a disabling disease she had no clue about two years ago.
Maria Eldin, born and raised in Dubai, told Gulf News: “I didn’t even know what the full form of MS was until after I was diagnosed with it. When something like this happens overnight, it can have a heavy toll on your mental health. MS or Multiple Sclerosis is a ‘snowflake’ disease because in many ways, it is still about battling the unknown and it shows up in different ways in different people.”
What is MS?
An autoimmune disease, MS impacts the brain, spinal cord and optic nerves, which make up the central nervous system. Its cause is unknown, but the damage to the nerve fibres disrupts the brain’s communication signals which causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. Each patient’s experience with MS is different and the symptoms may be temporary or long lasting.
Eldin, who is a high-achiever with a finance, marketing and accounting background, said she was diagnosed with MS on April 28, 2021, when she was still in final year university.
“I was a high performer - not just as a student studying five courses, but also straddling two full-time jobs and tutoring other university students on the side. I was also writing business pitches for entrepreneurs. My days were very busy and I would pack in as much as I could, with little thought to my health.”
She said four months before the MS diagnosis, she developed migraine headaches. But they were treated for just that and nothing seemed amiss, even as her hectic work schedule continued. “Until one morning, when I could not get out of bed because I felt pins and needles on my left side. It went numb,” she said.
Recalling how her sister, a doctor, urged her to visit a hospital, she said, “I will never forget that day in the ER. An MRI was done and my family was told about my condition. It didn’t matter that I was the one who needed to know as I was the one who was affected. It was only much later that the doctors who are currently treating me explained my condition and its implications to me.”
From denial to positivity
Eldin said for a long time, she remained in denial. “How could something like this happen to me and turn my life upside down?” she kept asking herself. But slowly, she learnt to come to terms with it. “I realised there’s more to life than the go-go-go. The diagnosis is a heavy weight to carry but it’s an easy lift-off once you learn to be that person who is positive for yourself and others around you.”
With no insurance cover, the cost of her treatment also weighed on her. But she is grateful for the part financial assistance she began to receive under a special programme.
Eldin said, “Battling a disease can make you feel burdensome, so you need to set expectations of what your family and friends can do for you and what you can do for them. That’s very important. I try to be brutally honest with myself and when I find I am spiralling into a feeling of being burdensome and out of balance, I remind myself that I am still around and see what best I can do today or the next day to feel better."
She said, "Over the last two years, I have learnt to be positive by focusing on things that work for me. Like meditation, yoga and long walks. I read a lot and I know that it is important to raise greater awareness about MS. There is lack of information, and even misinformation, about MS, so more people need to get the right picture.”
“When I was in college, I dreamt about going abroad, pursuing my studies further. All that has changed. I remember telling my doctor how I felt tied down to a pharmacy here in Dubai. But over time, I realised everyone has their own limitations to deal with. And I had to deal with mine."
She spoke about how the diagnosis totally realigned her dreams. “When I was in college, I dreamt about going abroad, pursuing my studies further. All that has changed. I remember telling my doctor how I felt tied down to a pharmacy here in Dubai. But over time, I realised everyone has their own limitations to deal with. And I had to deal with mine. I am now positive, more realistic about where I want to go and what I want to do. I pay more attention to work-life balance because at the end of the day, it all boils down to my health.”
MS STRONG offers complimentary health and wellbeing classes for those directly affected by MS, as well as friends and family members. As the symptoms of MS vary greatly, the classes have been carefully curated with various exercise options to accommodate the vast range of physical movement abilities attendees might have including those who might need to participate from a seated position and are wheelchair friendly.
NEW TO MS offers online access to some of the country’s most knowledgeable medical professionals who specialise in Multiple Sclerosis for those who have been newly diagnosed. Following extensive consultation with the community, the time of diagnosis can be both overwhelming and challenging in terms of finding the latest medical advice and navigating the large variety of symptoms which can occur in the currently incurable disease.
The online seminars will offer access to leading medical professionals across several fields, in both English and Arabic, and be open to those based not only in the UAE, but in the wider region, too. The sessions will also include advice from a key figure within the local MS Community and someone who has been living with MS to provide any practical tips alongside the latest medical guidance.
New treatments for MS
According to Dr Manio Maravic, Neurologist at the German Neuroscience Centre in Dubai, “MS is the most widespread disabling neurological condition amongst young adults around the world, with the majority diagnosed between the ages of 20 and 40 and women are twice as likely to be affected as men. There are different types of MS and researchers still don’t fully understand the causes or progression and the disease varies greatly amongst sufferers.”
Acute attacks or relapses of MS are treated intravenously with high dosages of steroids over three to five days. Plasma exchange is also done in severe case if steroids are not effective.
He said there is no cure for MS yet, but the development of modern therapies in the last 10 years – the so-called immune modifying treatments - have improved the course of the disease and is prognosis.
“Most important is the early initiation of MS preventive therapy with immune modifying medication, to stop the disease progression. We have in between many several disease modifying therapies (DMTs) for relapsing-remitting MS. Some of these DMTs can be of benefit for secondary progressive MS, and one is available for primary progressive MS. Much of the immune response associated with MS occurs in the early stages of the disease. Aggressive treatment with these medications as early as possible is a therapeutic, as they can lower the relapse rate, slow the formation of new lesions, and potentially reduce risk of brain atrophy and disability accumulation.
“We have injectable treatments for more advanced MS cases. As all substances act with certain aggressivity in our immune system, they are effective with regard to MS, but they also have the risk for serious side effects.”
He said the decision for an immune-modifying or suppressing treatment must be always an individual one, adapting to the needs and characteristics of the patient.
“But all the new treatments generate hope. Never before could we treat and neurologically accompany MS patients over a long time (years) without seeing clinical disease relapses or without detecting increasing numbers of lesions in the MRI controls of the brain and spinal cord of these patients. The prognosis of MS has improved significantly, and the risk of side effects should not be an obstacle to face the new treatments.”