Multiple Sclerosis Day: Understanding need for social support

CHENNAI: Every year, May 30 is observed as World Multiple Sclerosis Day. Multiple Sclerosis (MS) is a chronic, progressive disease that affects the nerve tissue of the brain and the spinal cord and thus disrupts functions and causes many symptoms and disability.

As per the Multiple Sclerosis Society of India (MSSI), about 1.8 Lakh people are diagnosed with MS in India, which is about 8-9 per 1 Lakh population. According to the 3rd edition of MS Atlas, 2.8 million people live with MS. This equates to 1 in 3,000 people. In countries with a high prevalence, as many as 1 in every 300 people have MS.

Due to the immune system wrongly attacking the myelin — a protective sheet around the nerves — there is impaired conduction of signals causing many physical symptoms such as muscle weakness, stiffness, fatigue, affecting balance and inability to walk, issues with swallowing, speech, and breathing. There are also cognitive and emotional disturbances including depression and anxiety, according to the National MS Society of the USA. With the average age of diagnosis between 20-40 years, the disease is not fatal, and patients lead a long active life with the right support and management.

However, different symptoms cause varying disabilities affecting the patient’s participation in every aspect of daily life which may require modifications in work life and finances, mobility and accessibility, diet, home, and leisure activities, and most of the time, in the close, extended family and other relationships. As it is said, MS affects a family, not just an individual.

Social stigma

Coping with MS is a challenge requiring support. In addition to managing the symptoms of the condition and the trauma of accepting the new normal, others’ reactions to MS become difficult for many patients. According to a study observed by Multiple Sclerosis Trust, UK, with 5369 participants enrolled in the North American Research Committee on Multiple Sclerosis (NARCOMS) register, it is found that depression is more common in individuals experiencing more stigma. It can be ‘experienced stigma’, which the patient had to go through; ‘anticipated stigma’, which a patient may think; and ‘internalized stigma’ based on their perceptions of the modified participation due to different symptoms.

According to a review paper by Ruth Dobson et al, assessing and addressing social determinants of health could fundamentally improve health and health care in MS, and social support forms an integral part of the management of the disease and has a substantial effect on disease outcomes and the progression of the disease.

MS Management

MS is sometimes called the ‘snowflake’ disease, as no two patients are the same in terms of the pattern of symptoms. With the different subtypes of the disease, with the relapsing, remitting, and progressive nature of the disease, and different factors contributing to the progression, the symptoms vary in different patients and at different times for the same individual. Management by the neurologist may include disease-modifying medicines, steroids, interferon beta therapy, plasma exchange, muscle relaxants to name a few, and physiotherapy, as per the Mayo Clinic.

Physiotherapy

Physiotherapy is an essential part of MS management. The Physiotherapy program includes combination of cardio and strength-training exercises to improve endurance and muscle strength and lower the cost of activity on the muscle. As muscle weakness and fatigue are common symptoms, physiotherapists prescribe an individual exercise program considering the limitations and abilities of the individual. Thus, carefully developed exercise programs not only help the physical symptoms but also helps modify the disease and slow its progression. Exercise helps with mood enhancement and improving the quality of life.

Role of Associations and Societies

As with many other medical conditions, research is needed to understand and manage the different symptoms and ways to improve the quality of life. As MS can be severely debilitating there is a need for support and awareness for the patients diagnosed with MS and their families regarding the resources available and recent advancements. Also, there is a growing need to create awareness in society at large so that they can understand, and support individuals diagnosed with MS, in an inclusive manner at workplaces, educational institutes, community spaces, and families.

Organizations like NARCOMS, a Global Patient Registry work with a vision to use patient experience to improve clinical care. In India, the Multiple Sclerosis Society of India (MSSI), works for the welfare of the persons diagnosed with MS. MSSI Hyderabad chapter, creates awareness with its many activities and advocates for its members in areas of insurance, research in the areas of management and improving the quality of life. GITAM School of Physiotherapy supports its initiatives and offers help in and around Visakhapatnam.

Scientists are finding ways to address the imperfections of humans through the wonders of Artificial Intelligence (AI). AI has the potential to heal, enhance and make up for the things our bodies lack, as per the documentary series ‘Age of AI’ (2019). While we have made leaps and bounds in advancements in technology, and with its assistance in managing many health conditions, its intervention in innovation for improved quality for patients with Multiple Sclerosis is eagerly awaited.

The author is Dr. Madhuri Kasi, Director, GITAM School of Physiotherapy, GITAM (Deemed to be University)