Multiple Sclerosis (MS) is the most common disabling neurological disease among young adults. MS is most often diagnosed in people between the ages of 20 and 40 and women are almost twice as likely as men to develop MS. An autoimmune disease which is not contagious, not inherited, cannot be transmitted from person to person, it is an unpredictable disease that varies from person to person.
The disease continues to baffle scientists and health experts searching for possible causes and a cure that still eludes them.
The Sunday Observer spoke to the President of the Multiple Sclerosis Association of Lanka Dr. Enoka Corea to explain what this mysterious disease is all about, how it is caused, its symptoms, and its impacts on the health of its victims physically, emotionally and psychologically. We also asked her what inputs the Association she heads is doing to help MS patients, the problems they confront, their plans for the future and most importantly how we the public can help give back the dignity and respect that the sufferers, mainly young bright outgoing women in the prime of their lives, now lack.
Excerpts;
Q. Multiple Sclerosis is still a disease that continues to baffle the medical world. What is MS? Who are most at risk of getting it?
A. Multiple Sclerosis (MS) is the most common disabling neurological disease among young adults. MS is most often diagnosed in people between the ages of 20 and 40 and women are almost twice as likely as men to develop MS. This reason for this gender difference is unknown.
Q. Is it contagious? Can one inherit it?
A. It is not an inherited disease or caused by trauma or infection. It is not contagious, and cannot be transmitted from person to person.
Q. Which part of the world is it found most?
A. MS is not equally prevalent in all parts of the world with MS being much less common in people living near the equator. However, there has been an exponential rise in the number of MS patients diagnosed in Sri Lanka and there must be many more ‘hidden’ cases. Once diagnosed, MS progresses throughout life, but treatments and specialist care can help people to manage symptoms well and delay progression. Although its cause is not known and a cure has yet to be identified, research continues.
Q. What happens in MS?
A. Messages are sent from the brain and spinal cord to all parts of the body through nerve fibres. The nervous system works because nerve fibres (axons) convey information between nerve cells (neurons) by way of electrical impulses. Surrounding and protecting the nerve fibres, is an important substance called myelin which helps messages travel quickly and smoothly from the brain to the rest of the body. (Nerves are similar to electric wires and the myelin is the plastic insulation around these wires). Just as when insulation gets damaged there may be a short circuit of an electric wire, in MS when this myelin sheath is damaged nerve impulses do not flow smoothly
Q. Is MS an infectious disease?
A. MS is an autoimmune disease. This means that the immune system, which normally helps to fight off infections, mistakes its own tissue for a foreign body and attacks it. In MS the myelin sheath is the major target of attack. The immune system attacks the myelin surrounding the nerve fibres destroying it (demyelination). This damage to myelin disrupts messages travelling along nerve fibres. The messages can slow down, become distorted, pass from one nerve fibre to another (short circuiting), or not get through at all. Due to ‘short circuiting’ the axons become less efficient at conveying information.
As the nervous system links all bodily activities, many different symptoms can appear in MS, depending on which part of the nervous system is affected.
Q. What are the symptoms of MS?
A. MS is unpredictable. It varies from person to person and can result in a wide variety of symptoms, none of which is unique to MS. People can have different symptoms at different times and although some are very common, there is no typical pattern that applies to everyone. Some of the common symptoms are:
An overwhelming sense of tiredness- Balance problems: walking difficulties, problems with co-ordination
- Visual problems: blurred or double vision, temporary loss of sight in one eye or both
- Numbness or tingling: commonly in the hands or feet
- Pain: sometimes mild, sometimes severe
- Loss of muscle strength and dexterity
- Stiffness and spasms: tightening or rigidity in particular muscle groups
- Anxiety, depression or mood swings
- Difficulty with memory and concentration
- Speech problems: slurring, slowing of speech, or changes in pitch or tone
- A lack of control over bladder or bowel functions
- Sexual problems: lack of libido, erectile difficulties
MS symptoms range from mild to severe, from brief to persistent. Some symptoms, such as walking difficulties, are obvious to other people. Others, such as pain or fatigue, are not and are often referred to as hidden, invisible or silent symptoms. MS can be difficult to diagnose since its signs and symptoms may be similar to many other medical problems.
Q. What are the main obstacles that patients face socially? Do they feel isolated? Do they feel society looks on them differently?
A. Disability leads to social problems such as inability to visit public places, due to lack of facilities for the disabled, and stigma, due to ignorance about MS, resulting in feelings of loneliness, depression, guilt.
MS can be devastating to a young person, especially if s/he is the bread winner of the family with a young family to support. Some patients require round the clock nursing, expensive drugs to manage the symptoms, regular physiotherapy and rehabilitation. As these patients are young and have a normal life span, care has to be provided for many decades.
Q. Is there any treatment?
A. Although there is no known cure for multiple sclerosis, several therapies have proven helpful. The primary aims of therapy are returning function after an attack, preventing new attacks, and preventing disability.
These so-called ‘disease-modifying therapies’ are very expensive and have many unwanted side effects. However, they may be effective in slowing down progress of the disease. The government has agreed to offer this treatment to a selected number of patients in the state sector. The patients have to be selected and recommended by the neurologists.
Q. MS has been around for a long time but it is only recently that it has received serious attention. What brought about this new focus on the disease which eventually led to the setting up of the Multiple Sclerosis Association of Lanka?
A. MS is a disease that is notoriously difficult to diagnose as the symptoms and signs are not specific. The disease may affect any organ or system and patients may go to different specialists depending on the organ affected, for example, to ophthalmologists for eye symptoms.
In addition there is no specific test to diagnose MS. Careful examination by a neurologist and MRI scanning of the brain is needed to come to a diagnosis.
Until recently both neurologists and MRI scans were not readily available. With the advent of these services more patients with MS are being detected and diagnosed, hence the increase in the number of MS patients in Sri Lanka.
Q. Who founded the MS Association of Lanka? Was it a victim of the disease?
A. It was started by Dr Hithaishi Perera, a doctor and MS patient who realised that her fellow MS patients needed a support group to combat the stigma and isolation they felt and the lack of knowledge and awareness among their families and communities. She mobilised a group of her classmates and launched MSAL as its first President. Unfortunately, due to increasing ill health she was unable to continue day to day running of the Association and asked me to take over.
Q. How many MS patients are there in Sri Lanka?
A. The number of MS patients in Sri Lanka is unknown as there is no MS registry. There are just over 100 patients who are members of MSAL. Neurologists estimate that there must be at least 1000 patients in Sri Lanka, many still undiagnosed.
Q. What is The Multiple Sclerosis Association of Lanka (MSAL) doing to help patients with MS?
A. The Multiple Sclerosis Association of Lanka (MSAL) is an association bringing together persons with MS, their doctors, caregivers and other well wishers with a view to promoting optimum health and improving the lives of persons with MS. MSAL was started in year 2006 and is a registered company with audited accounts. It is affiliated to the Multiple Sclerosis International Federation and is a voluntary organization funded by donations and fund raising activities of the Association.
Q. What is its main goal?
A. The main aim of the Association is to provide support to persons living with MS. Activities of the Association include providing moral support to patients and caregivers through home visits, organizing talks by experts to help patients understand and cope with their disease and by providing financial assistance, where necessary, for wheelchairs, physiotherapy, purchase of drugs and disposables, for travel to MS meetings and for daily living especially in cases where the bread winner has been affected.
The association serves as a support group for patients and their families where they can share their day to day problems and solutions. Through the association, people round the country could be made aware of Multiple Sclerosis and know that something can be done about preventing permanent disability.
The association hopes to raise funds to build awareness, train nurses, attendants and family members, provide rehabilitation accessories, counseling, and support and effect infrastructure changes in patients’ homes to aid in improving mobility and self-sufficiency.
Q. Where do members normally meet?
A. MS meetings are held in Colombo and Kandy. These meetings provide an opportunity for MS patients to share their experiences and coping mechanisms with other patients and are open to anyone interested in MS.
We have had many speakers addressing our meeting including international specialists in MS, neurologists, urologists, speech therapists, physiotherapist and nurses, including nurses specializing in rehabilitation.
Q. What are the recent activities of your Association?
A. We have published articles on MS and interviews with MS patients in the newspapers, in both English and Sinhala, in our effort towards creating greater public awareness and are hoping to have some publicity in the Tamil language newspapers as well.
The latest venture of the association is a programme to conduct a needs assessment of each patient in their own home environment to generate recommendations for patient care, physiotherapy, assistive devices and alterations of home infrastructure needed to improve the quality of life of our patients.
Q. What is your message to the public?
A. People with disabilities would like to be treated as equals and not viewed with pity or disgust. Everyone will become disabled as they grow older. Therefore we should all join to ensure that the disabled are given the same opportunities for education, higher education and employment as everyone else. Buildings, entertainment centres and recreational facilities should have equal access for the disabled.
The MSAL would like to invite all persons with MS to join the MSAL and contribute to its activities. We would be grateful if doctors who care for MS patients would inform their patients of this Association and its activities and refer them to the association or send us names and addresses of patients. MSAL can be contacted at msalinfo@sltnet.lk or MS Association of Lanka, 144 Vipulasena Mawatha, Colombo 10 or at the following number 0777319333. More information can be found on our website www.mssrilanka.org.
The MSAL is a voluntary organization funded by donations and fund raising activities. Fund raising activities are held regularly and include benefit show and movies, jumble sales, sale of Christmas cards and key tags etc.
The Association would welcome donations which will be used to further the objectives of the Association. Donations could be made to The Multiple Sclerosis Association of Lanka, Commercial Bank A/c Number 1100037477.