UAE: Society to support people with multiple sclerosis launched

Abu Dhabi: The UAE now has a dedicated organisation to deliver support and community, and improve healthcare outcomes and research for people living with multiple sclerosis (MS).

The National Multiple Sclerosis Society (NMSS) announced its launch in the capital, alongside a registry that will seek to record the number of people living with the condition.

The new non-governmental organisation (NGO) will operate under the Ministry of Community Development (MCD).

People living with MS

“The NMSS drives its vision from the vision of our founding father, the late Sheikh Zayed bin Sultan Al Nahyan, who firmly believed in the importance of supporting the health and wellbeing of citizens, including protection from illness and disease…We celebrate [its launch as] a society which seeks to make a real difference in the lives of people living with MS, and to support them as we work together to seek better treatment, and ultimately a cure.

"The main goal of the association is to empower and support those with MS to live their lives to the fullest, and to raise community awareness and work towards creating a world without multiple sclerosis,” said Sheikh Theyab bin Mohamed bin Zayed, Member of the Abu Dhabi Executive Council.

What is MS?

MS is a neurological disease that disrupts the flow of information within the brain, and between the brain and body. It is caused by damage to myelin – the protective layer of nerve fibres which allow nerves to transmit impulses to and from the brain. In the areas where myelin is lost, hardened scars appear in various areas of the brain and spinal cord.

The condition typically affects young adults, and can cause a range of symptoms including numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. Studies show that MS affects more than 2.8 million people globally. In the UAE, 2,000 people have been diagnosed with the disease, but the actual number of people living with MS is thought to be more two times higher.

In line with international trends, women in the UAE are three times more likely to develop MS than men. Patients are typically diagnosed in youth adulthood, between the ages of 20 and 40 years.

While MS is still relatively rare, the unpredictable and often disabling nature of the disease can cause a range of physical, emotional and mental health challenges for those affected. To determine the number of people affected by MS in the UAE, the Department of Health, Abu Dhabi and the NMSS will therefore focus on raising awareness across the country. The early diagnosis and treatment of the illness improves long-term health, can reduce the number of relapses people experience.

New registry

The new NMSS registry will meanwhile aim to track the number of people with MS in the UAE as well as their progression. It will be developed in partnership with the health regulator, the Department of Health, Abu Dhabi, the Abu Dhabi Public Health Centre, and tech innovator G42.

Dr Fatima Al Kaabi, vice-chair of the NMSS board of trustees, and director of the Bone Marrow Transplant Programme at the Abu Dhabi Stem Cells Centre (ADSCC), announced at the NMSS launch the provision of Dh2 million worth of research grants to support local and international researchers looking to further the understanding and treatment of MS.

The research supported will also seek to provide a better understanding of the characters of the disease among patients in the UAE.

Innovative treatments

Experts also discussed Abu Dhabi’s provision of autologous hematopoietic stem cell transplantation and bone marrow transplantation to treat MS patients facing an aggressive form of the disease. The ADSCC has recently treated a patient in her 20s who was diagnosed with MS after she suddenly lost the ability to walk.

“The young lady had been prescribed steroids to help with the initial symptoms, but she soon relapsed. She was then given effective medication, but the lesions in her brain were still growing four months later, and new ones were growing,” said Dr Ruqqia Mir, consultant neurologist at the ADSCC.

The patient underwent the stem cell transplant to treat her condition, and three months later, she can walk independently, and is once again looking at resuming her education. Dr Mir called it a game-changing treatment that is considered standard of care in Europe and United States, and said she hoped more patients with an aggressive, inflammatory form of MS will soon consider opting for it in the UAE.

“We have seen so much advancement in the treatment and understanding of MS over the last decade that I hope the next decade will result in a cure,” Dr Mir said, adding that the ADSCC is also looking at ways to treat patients with progressive MS.

Support groups

The NMSS has meanwhile launched a series of moderated sessions or support groups for people with MS to discuss key topics and challenges, known as MS Circles.. There will also be webinars in which experts will share information on various critical topics, including family planning, healthy living, and treatment options.

The society will also soon launch volunteer initiatives that will enable residents to advocate for the MS community.

“Every person with MS deserves to live an empowered and fulfilling life by having access to the best possible care. NMSS will be a critical partner in delivering this vision as we progress with building an ecosystem of support across the UAE. Everything we do will be informed by the experiences of those living with MS – we will listen to and learn from them,” Dr Al Kaabi said.

Patients hopes

Dr Ahmed Shatila, consultant neurologist at the Sheikh Shakhbout Medical City, has been living with MS for 22 years. Attending the NMSS launch, he said the society will help educate people about the condition. He also expressed hope that they advocacy and research will help make the disease less debilitating, or even make way for a cure.

Rana Amaluddin, a mother living with MS for seven years, said she hoped the NMSS will help newly diagnosed patients feel less isolated, and allow patients to lean on one another for support.

“For me, the MS diagnosis 12 years ago was a wake-up call to change the way I lived, to improve myself mentally, physically and emotionally. Not knowing anyone with MS, I felt alone in my fight. So I am hopeful that the NMSS will help new patients see others successfully living with the condition [and attaining their goals],” added Khalid, an Emirati patient with MS.