It is a disease, still shrouded in mystery which has defied scientific explanation as to why and when it could suddenly afflict a hitherto healthy, active young person, changing his /her life for ever with long lasting adverse health impacts.
That MS strikes those between the ages 20-40 and the disease is 2-3 times more common in women than men makes it even more tragic as many of them are either on the threshold of marriage or already young mothers.
President of the Multiple Sclerosis Association of Sri Lanka ( MSAL) Dr Enoka Corea discusses some of the possible causes that trigger this condition and tells how modern therapies can enable patients to enjoy life to its fullest potential.
Excerpts from her interview with the Sunday Observer …
Q. Multiple Sclerosis (MS) is said to be the most disabling neurological disease among young adults word wide. Do you agree?
A. Yes. While most other common neurological diseases, such as stroke, Parkinsonism and dementia, occur in old age, MS strikes those between the age of 20 and 40. This is the time of life when these young adults are just beginning their careers and starting their families. A diagnosis of MS can be devastating.
Q. Is it more common among young women than men? If so why is there a gender difference?
A. MS is 2-3 times more common in women than men. It is not clear why this is so.
Q. Globally, I understand there are over 2.5 million affected by this disabling condition. What is the number in Sri Lanka? Is there a registry where the numbers of patients are recorded?
A. There is no registry of MS patients in Sri Lanka. The Multiple Sclerosis Association of Lanka have 125 persons with MS, in the membership. The Association of Sri Lankan Neurologists estimates 1,000 patients in Sri Lanka (based on rates of MS in India).
Q. Have you seen a steep rise in the numbers recently? How do the numbers compare with the past?
A. In the past, it was thought, MS was not found in Sri Lanka. However, MS can be difficult to diagnose. We need to have an adequate number of neurologists and facilities for MRI scans.
It is only in the last decade that we have had these services. Since then, there has been a great increase in the number of MS patients diagnosed, who would not have been diagnosed previously.
The contributors to the increase in MS include, greater awareness of the disease, better access to medical care and improved diagnostic capabilities.
Q. Can any person get MS at any age?
A. It is possible to get MS at any age but the most common age of onset of the disease is 20 - 40. It is very uncommon in children.
Q. MS has been described as an ‘autoimmune disease’. What does that mean in layman language?
A. The immune system of the body is designed to attack and destroy any foreign invaders of the body, particularly, agents causing infectious diseases. In autoimmune diseases, the immune system begins to attack and destroy the tissues of the body. In MS, the target of the immune system is the myelin sheath around the nerves (the insulation sheath around the nerves).
When the myelin sheath is damaged, nerve conduction is affected and “short circuits’ can occur.
The normal function of the nervous system is affected. This can present blindness or difficulty in walking, incontinence of urine etc.
Q. What causes it?
A. There is no single cause. The risk depends on factors including gender, genetics, age, sex, geography and ethnic background. It is estimated that the chance of getting MS in the US is 0.1%. The risk is much lower in Sri Lanka
Q. What are the symptoms? What are the most common? Are they the same in every patient?
A. One of the difficulties in diagnosing MS is that every patient may have different symptoms, depending on which nerves are affected.
Common presentations are, sudden onset blindness in one eye, weakness or numbness in a limb, difficulty in walking, bladder or bowel incontinence, double vision, etc. But, the symptoms may be very vague, for example, chronic fatigue. Many patients say, they were labelled as “clumsy” or “lazy” by their relatives and colleagues, before they were finally diagnosed as having MS.
Q. Are they predictable? Can a patient have a pre warning before their onset? Can these symptoms come and go or are they lasting?
A. Most patients have relapsing remitting MS. That means, symptoms come on suddenly and gradually improve. There may be months or years before another symptom appears and we cannot predict when this would happen. However, over time, the disability gradually accumulates.
Q. Does MS cause paralysis?
A. Because MS can affect any nerve of the body it can affect both the sensory nerves (that govern sensation) and the motor nerves (that govern movement). Therefore, damage to the nerves can result in numbness and/or weakness.
Q. Is it fatal? What is the average lifespan of a victim?
A. Multiple sclerosis is seldom fatal and life expectancy is shortened by only a few months. Concerns centre primarily on maintaining the quality of life and limiting disability.
Q. Can a woman with MS get pregnant? Can she have normal sexual relationships?
A. Pregnancy is safe in most MS patients and does not negatively influence MS disease course overall. Normal sexual relationships can take place.
Q. For those who have been active physically, for how long can they continue after getting MS?
A. Most persons with MS will progress very slowly and have only limited disability.
Q. Can it be cured?
A. Currently MS cannot be completely cured. However, there are disease modifying therapies that can slow the progress of the disease. A lot of research is taking place and it is likely that newer and better therapies will become available soon.
Q. How are patients treated?
A. It is important to maintain a healthy lifestyle by keeping a correct body weight, healthy diet, moderate exercise and adequate sleep. Physiotherapy is very useful to maintain the tone and strength of the muscles. Disease modifying therapies slow down progression of the disease. There are many strategies and drugs that can help to improve symptoms and disabilities.
Q. What are the main obstacles that MS patients face apart from their physical impact- e.g. socially and psychologically? Can it lead to depression?
A. A diagnosis of MS can be devastating to the individual and the family. However, many patients in Sri Lanka are well supported by an extended family that comes forward to care for them. Unfortunately, Sri Lanka has no social security system to assist families caring for patients with chronic diseases. In other countries MS nurses visit the homes of patients and support and train the caregivers and disability payments are made to such families to help them with the financial difficulties of caring for such patients.
Psychologically, too, MS can result in denial, grief and depression. MS patients may feel they are a burden to the family and society. So it is important to support MS patients to lead a productive life and contribute to society.
Q. The Multiple Sclerosis Association of Lanka (MSAL) was founded in 2006 by Dr Hithaishi Perera who is herself an MS patient. What inspired her to set up this Association in the first place?
A. Dr Hithaishi Perera used to meet many MS patients while they were waiting to see the neurologist. She realized that many of them were ignorant of the disease. They often felt isolated and thought they were the only person with MS in Sri Lanka. She felt they needed a forum to bring them together to support each other and share experiences. That is why she set up MSAL.
Q. As its present President tell us about the activities this Society has been carrying out in recent years.
A. The MSAL holds regular meetings in Colombo and Kandy for MS patients and their families. We have speakers who inform about MS or physiotherapy or give motivational talks. We commemorate World MS Day where we focus on raising awareness of MS, among doctors, other health care workers and the general public.
This year World MS Day will be celebrated on Wednesday, May 30. We raise funds to provide crutches, wheelchairs, air mattresses, etc. We pay for short courses of physiotherapy. We also support school going children with a monthly allowance for tuition fees.
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 an occupational therapist who visits patients’ homes to assess their needs and advise the care givers. Based on the recommendations of the occupational therapist, we assist patients to improve facilities in their homes by building ramps, installing rails in the bathrooms or other infrastructural changes.
Q. Is MSAL a voluntary organization? Does it have the blessings of the Ministry of Health?
A. MSAL is a voluntary organization. World MS Day events have been graced by the President, Maithripala Sirisena, when he was the Minister of Health and by Dr Ravi Ruberu former Director General of Health Services. MSAL has successfully lobbied the Ministry of Health to provide disease modifying drugs through state hospitals, to MS patients.
Q. Who are your funding agents, both in Sri Lanka and abroad?
A. We raise funds from well-wishers and through benefit shows.
Q. Are you affiliated to the International MS Foundation? Do you work closely with global partners?
A. MSAL is a registered company affiliated to the Multiple Sclerosis International Federation. However, they do not provide any funding.
Q. Have your main goals changed since the Association was founded in 2006?
A. The main goal to support people living with MS has not changed. Initially we felt we should establish a nursing home to care for disabled MS patients. Now we realize that ensuring that their own homes are made disabled friendly and that care givers and patients are empowered to cope with their daily needs is more important.
Q. How often and where do you meet?
A. Patients meetings are held four times a year in Colombo and three times a year in Kandy.
Q. Is it true that accepting the disease helps since there is no cure?
A. Although there is no cure, progress of MS can be slowed by living a healthy lifestyle. A positive outlook helps to improve the quality of life. The motto of the MSAL is “Getting the MoSt out of life” where the capital M and S stand for MS!
Q. Since MS is still a relatively little known disease how are you trying to educate the public?
A. We have published many articles in the English and Sinhala press and would like to reach out to the Tamil press as well. MSAL has been featured on TV shows. We have an information leaflet available in all three languages. However, we would like to do more.
Q. Do you have a message for the public?
A. Do not stigmatize people with chronic diseases and disability. Treat them with special kindness and respect. Ensure all public places are disabled friendly. Make public transport safe and easy for disabled people and their carers.
Q. If a patient or relative wants to contact you for more information on MS who should they contact? Do you have a website? An email address? A telephone number?
A. Information on MS can be obtained from our website www.mssrilanka.org. Our email address is [email protected]. Information can also be obtained by calling 0777319333.