The Multiple Sclerosis Association of Lanka (MSAL) organized a walk themed, ‘Living with MS’ on World MS Day with the participation of MS patients and caregivers on June 17 in a bid to raise awareness about Multiple Sclerosis (MS) among the general public. The participants commenced the walk from the Cinnamon Garden Baptist Church premises and continued towards Viharamahadevi Park and back for a commemorative lunch served at the church. The MSAL went a step further to reimburse a portion of travel costs that the MS patients had to bear.
Multiple Sclerosis is a disorder of the brain and the spinal cord (the central nervous system) which causes communication problems between the brain and the rest of the body due to the immune system attacking the protective sheath that covers nerve fibres. A significant segment of the public is not aware of this condition which severely impacts the lives of both, patients and their families and requires the interest and support of the larger community.
Calling for a heightened public awareness of the condition, President of Multiple Sclerosis Association of Lanka, Dr. Enoka Corea said, “One of our key areas of concern for MS patients is the lack of accessibility for them to public-spaces – be it a place of entertainment or worship, and more importantly, the lack of employment opportunities. This is a serious issue which causes patients to feel useless and unproductive, which in turn tends to affect their mental health and well-being.
The stigma of disability and unwarranted pity can alienate them from day-today-activities and the society in general. It is important to remind ourselves that we all could develop some sort of disability with ageing and we would benefit if we address these issues.” In Sri Lanka, the MSAL has held commemorations of this Day ever since the first World Multiple Sclerosis Day, in 2009.
Multiple Sclerosis Association of Sri Lanka
The Multiple Sclerosis Association of Lanka (MSAL) is an association that brings 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. Initiated in 2006, MASL is a registered company with audited accounts.
MASL is affiliated to the Multiple Sclerosis International Federation and is a voluntary organization funded by donations and fund raising activities of the Association.
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 by creating a space in which they can share their day to day problems and solutions.
MASL looks to gain public support to prevent permanent disability through awareness building.
The Association hopes to raise funds to build awareness, train nurses, attendants and family members, provide rehabilitation accessories, counselling, and support and make design and infrastructure changes in patients’ homes to aid in improving mobility and self-sufficiency.
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. MSAL has had many speakers addressing their meetings, including, international specialists in MS, neurologists, urologists, speech therapists, physiotherapist and nurses, including nurses specializing in rehabilitation.
MSAL has also published articles on MS and interviews with MS patients in newspapers, in both, English and Sinhala, in their effort towards creating greater public awareness.
The latest venture of the Association is a program to conduct a ‘needs assessment’ of each patient in their own home environment to generate recommendations for patient care, physiotherapy, assisting devices and alterations of home infrastructure needed to improve the quality of life of the patients and their caregivers.
Talking about the importance of early diagnosis, and the availability of medical care, Dr Udaya Ranawake – President, Association of Sri Lankan Neurologists (ASNA) said, “Some of the drugs required in treating MS is available in the government sector on a limited scale. Treatment for MS is available at main hospitals such as, Teaching Hospitals and Provincial Hospitals where a neurologist is present.”
Dr Ranawake added, “MS is a serious health condition – a condition mostly affecting people in the prime of their youth, and early detection is the most helpful way of treating the condition.
“A main drawback that prevents early detection is the limited number of MRI machines available in Sri Lanka. In the government sector it is limited to the main hospitals in Colombo, Kandy and Galle. I urge individuals who suffer from symptoms related to MS to consult a neurologist and take appropriate action.”
Symptoms
MS causes a wide variety of symptoms, though many people experience only a few. It is unlikely that a person will develop all the symptoms of MS. Symptoms are usually unpredictable, and some find them worsen gradually with time.
More commonly, symptoms come and go at different times. Periods when symptoms worsen are called relapses, and periods when they improve (or even disappear altogether) are called remissions. MS symptoms can include problems with the patient’s vision, muscle spasms and spasticity, stabbing or burning sensations occurring due to the damage suffered by the nerve fibres, pain in the patient’s muscles, fatigue, bouts of depression and anxiety, skin numbness or tingling, muscle paralysis, problems with balance and coordination. Other symptoms may include difficulty in concentration, muscle spasms or tremors, dizziness, difficulty in passing urine, difficulty in speech and in men the inability to have an erection of the penis.
Multiple Sclerosis initially develops in the early 30s and women are twice as likely to develop the condition compared to men. While the disorder is not hereditary, there is an increased chance of MS developing in close relatives of affected people.
Treatment
The treatment and medication for MS is fairly expensive. While most patients worldwide struggle to meet the financial expenses of treating the disease, in Sri Lanka, patients are privileged to have the support of the government to battle this disorder.
They receive certain required medication through the free healthcare system, widely available in the country. Talking about treatment of MS and the case of Sri Lanka, Dr. Lal Panapitiya, Director - Medical Supplies Division said, currently patients who have been identified by a Consultant Neurologist are fortunate enough to receive medication and assistance from government facilities.
He added that the Health Ministry is in the process of streamlining the tender procedure after which medications will be more widely available.
At present, apart from the National Hospital in Colombo, MS treatment can be obtained at the Neurology Centre of the General Hospital, Kalutara and the Lady Ridgeway Hospital in Colombo.
Treatment is also available at the Neurology Centres of Teaching Hospitals in Colombo South, Kalubowila, Colombo North, Ragama, Kandy, Karapitiya, Anuradhapura, Batticaloa and Jaffna. Patients can also seek treatment from various Provincial General Hospitals in areas such as Kurunegala, Ratnapura and Badulla, as well as District General Hospitals such as, Matara, Polonnaruwa, Vavuniya and Ampara.
At present, MS is not a curable disease but patients can find relief from some of the symptoms through medical care. The treatment regimens fall into four categories, namely; Medicines that aim to modify the disease process, Steroid medication to treat relapses, Other medication to help ease symptoms and Other therapies and general support to minimize disability.
Medicines that aim to modify the disease process include a range of ‘immunomodulatory’ agents which should be prescribed by a qualified physician, as these drugs are not suitable for all MS patients. Steroids are prescribed temporarily in the case of a relapse which causes disability.
However, in both cases a neurologist should prescribe the medication and keep the patient under strict observation. Depending on the symptoms that the patient develops, other types of treatments may be advised to combat the symptoms. These include anti-spasm medicine, painkillers to ease neuropathic pain, medication to help urinary tract problems, antidepressants, as well as, medicine to help people experiencing erectile dysfunction due to MS.
More advanced treatment and therapy include physiotherapy, occupational therapy, speech therapy, psychological support and counselling.
(P.R.)