Living with MS: Awareness raising, need of the hour | Sunday Observer

Living with MS: Awareness raising, need of the hour

Wheelchair access to public spaces, places of worship or even hospitals is not widely available
Wheelchair access to public spaces, places of worship or even hospitals is not widely available

As the disease Multiple Sclerosis ( MS) continues to spiral upwards, this month is dedicated to educating and raising awareness on this relatively little known disease. Ongoing awareness and education programs by private organisations such as the Multiple Sclerosis Association of Lanka (MSAL), have resulted in some positive changes: increased awareness among doctors, appointment of neurologists to more hospitals and the availability of MRI scanning machines. This has led to the discovery of more new patients. An estimated 1,000 patients are said to have been diagnosed with MS in Sri Lanka. However, this is probably only a fraction of the actual numbers says the President of the Multiple Sclerosis Association of Lanka (MSAL), Microbiologist and Senior Lecturer Faculty of Medicine , University of Colombo, Dr Enoka Corea.

Following are excerpts from her discussion with the Sunday Observer…

Q. March has been declared as Multiple Sclerosis (MS) Education and Awareness month. What makes this health issue so important to warrant a special month to raise awareness about it worldwide?

A. MS is increasing worldwide, including in Sri Lanka. Since the symptoms and signs of MS are variable and non-specific it is important for the public and for doctors to be aware of this condition so that patients can be diagnosed early.

Q. Compared to the past, is there a rise in the number of new patients?

A. There is a definite increase in the number of new patients in Sri Lanka. This is due to an increase in awareness among doctors, appointment of neurologists to more hospitals and the availability of MRI scanning machines. However, the number of diagnosed patients is probably only a fraction of the true number. It is estimated that there should be at least 1,000 MS patients in Sri Lanka.

Q. Is there a Registry of MS patients in Sri Lanka?

A. There is currently no national Registry maintained by the Ministry of Health. However, there is a dedicated MS clinic conducted at the National Hospital with a database. The MSAL has over a 100 members.

Q. Living with MS can be a traumatic experience. Why?

A. Because it is one of the most disabling neurological diseases that affects young people, mainly young females. It affects their education, career and family life and has a profound effect on other family members as well. So the impact is felt by the whole family and community.

Q. You mentioned that it is more common among young women than men. Why is there a gender difference?

A. Females are 3-4 times more likely to get MS than males. The reason is unknown.

Q. Can any person get MS at any age?

A. MS can occur at any age but it is common between the ages 20 to 50 and is unusual in young children and older adults.

Q. MS has been described as an ‘autoimmune disease’. What does that mean in layman language?

A. An autoimmune disease is one where the disease is caused by the immune system mistakenly attacking and damaging one’s own cells, tissues and organs. In MS the immune system specifically targets and damages the ‘myelin sheath’ which is the insulation that surrounds the nerves. This may happen in many parts of the nervous system resulting in scarring (sclerosis), thus giving rise to its name “multiple sclerosis”. Nerve conduction is disrupted in the involved nerves, resulting in problems such as, urinary incontinence, difficulty walking and blindness.

Q. What causes it?

A. The cause of MS is unknown, but it is likely due to a combination of environmental and genetic factors. MS is more common in countries that are further from the equator and in identical twins and family members of MS patients.

Q. What are the symptoms? Are they the same in every patient?

A. The symptoms of MS are vague and differ from patient to patient. They are variable and unpredictable in each patient, and range from mild to severe. Symptoms include fatigue, numbness and tingling, weakness, spasticity, blurred vision, difficulty in walking, incontinence, pain and emotional changes including depression.

Q. Are they predictable?

A. They can vary from day to day. They may be chronic and progressive or improve and relapse from time to time. There are clearly defined attacks of illness where new symptoms develop, followed by periods of remission where the symptoms gradually improve. The symptoms may disappear completely or some may become permanent. After a period of remission another attack (relapse) takes place. Over a period of time the number of permanent symptoms increase leading to increasing disability.

Q. Does MS cause paralysis?

A. While MS does not cause paralysis, muscle weakness may occur. Regular physiotherapy is one of the most useful therapies and should be provided to all patients.

Q. Is it fatal?

A. The main problem with MS is living with disability.

Q. Can a patient with MS have normal sexual relationships?

A. Sexual problems are common in male and female MS patients, as in normal men and women. These include emotional factors such as loss of self-esteem and depression. However, MS does not affect the basic fertility of men or women.

Q. For those who have been active physically, for how long can they continue after getting MS?

A. The course of MS can be highly variable. Some have very few relapses and continue to live a normal life. In some people MS can be progressive resulting in significant disability within a short period. The important thing is to maintain a healthy lifestyle, in terms of sleep, exercise, rest and nutrition.

Q. Can it be cured?

A. MS is not curable at this moment. However, there are ‘disease-modifying’ medications useful in slowing down the progression of the disease. In addition, there are drugs to treat the acute attacks. Quality of life can be improved significantly by symptomatic treatment with medications and rehabilitation. Physiotherapy and occupational therapy can help maintain optimum lifestyle and fitness.

Q. How are patients treated?

A. MS patients are best treated at a dedicated MS clinic. This should comprise a multidisciplinary team led by the neurologist and include specially trained MS nurses, physiotherapists, occupational and speech therapists, psychologists and counsellors, nutritionists, urologists, specialists in sexual health and family physicians. Unfortunately, such MS teams are not seen in Sri Lanka.

Q. What are the main obstacles that MS patients face apart from their physical impact?

A. The obstacles are common to all groups of people living with disabilities in Sri Lanka. While the positive aspect is that family members of these patients are willing to care for them in their homes, the public and the Government does very little to support these caregivers. Public transport in Sri Lanka is not disabled-friendly and people with disabilities, including the elderly, find it difficult and dangerous to use them. Job opportunities are very limited.

There is very little social or financial support for families with members who need continuous care. Wheelchair access to public spaces, places of worship or even hospitals is not widely available. There is also a lot of social stigma attached to the illness, with people and even doctors, blaming the patient and saying that it is due to their ‘bad karma’. Such attitudes should be discouraged.

Q. The MSAL was founded in 2006 by Dr Hithaishi Weerakoon who is herself an MS patient. As its present President tell us about the activities this Society has been carrying out in recent years.

A. MSAL serves as a social support organization for people living with MS. We have regular meetings where patients and their caregivers get to meet each other and share their experiences, problems and solutions. We have educational and motivational talks. We support self-employment for patients who are home bound, and the most destitute with monthly financial support. We provide wheelchairs, air mattresses and other devices when required and fund home-based physiotherapy. Most importantly, we make people with MS feel that they are not facing their challenges alone and unsupported.

Q. One of your latest projects is the Needs Assessment program where the needs of each patient is assessed in her own home environment. Can you explain in detail what this involves and what its benefits are to the patient in terms of improving her quality of life?

A. We have a qualified occupational therapist who does home visits to each patient. He can assess each person’s ability to perform activities of daily living and recommend alterations to their houses and bathrooms and devices to improve their quality of life. He also trains the patient and caregivers on how to maintain mobility and independence.

Our plan, this year, is to form a group of physiotherapists who are willing to visit our patients at home and provide home-based physiotherapy as it is very expensive and difficult for these patients to access hospital-based physiotherapy services.

Q. Is MSAL a voluntary organization? Does it have the blessings of the Health Ministry?

A. MSAL is a voluntary organization, supported by donors and run by volunteers. The Ministry of Health has supported us by providing disease modifying drugs to our patients through state hospitals.

Q. Since MS is still a relatively little known disease how are you trying to educate the public?

A. We have a regular program on World MS day (the last Wednesday of May).

Q. Do you have a message for the public?

A. We are all going to be disabled at some stage of our lives.. However, the public infrastructure in Sri Lanka is not disabled-friendly. The disabled face stigma and discrimination. The public of Sri Lanka should support the rights of the disabled to education, jobs, access and mobility.

Q. Any contact number?

A. MSAL can be contacted at [email protected] or at 144 Vipulasena Mawatha, Colombo 10, or at 0761516476 or 0777319333. More information can be found on thier website or at our Facebook page.