Afew days ago neurologists and scientists across the world gathered together to pool their resources and share their knowledge on Multiple Sclerosis (MS) described as the most common neurological condition in young adults (mostly young women) between 20 and 40 years.
Sadly there is no cure for this disease which attacks mainly the nerves of the body causing serious health complications as it progresses. This includes mobility functions such as walking, running, eating disorders, and disruption of normal bowel and bladder functions. And worse still, can even lead to temporary or permanent blindness if it attacks the optic nerve.
Yet the good news is that early diagnosis and treatment can help to speed up recovery from attacks and slow the progression of the disease. In fact, some people have such mild symptoms that no treatment is necessary, said the President of the Multiple Sclerosis Association of Sri Lanka (MSAL) Prof. Enoka Corea.
Prof. Corea fielded several questions on this baffling silent disease which takes the victim unawares at the prime of her life when the Sunday Observer asked her to give our readers a better insight into what the disease is and early symptoms to look out for, as well as effective ways of managing it so that patients can live normal and full lives like anyone else.
Excerpts
Q:World Multiple Sclerosis Day was observed on May 30. As many of our readers still do not know what this disease or condition is or has never even heard of it, could you tell us what Multiple Sclerosis (MS) is?
A. Multiple Sclerosis (MS) is a neurological disease where your immune system (which is supposed to fight infections) starts attacking your nerves. Specifically, the immune system begins to attack the covering (myelin sheath) of the nerves. Since the nerves are like electric wires transmitting signals throughout the body, they need to be ‘insulated’. The nerve covering (myelin sheath) acts as the insulation around these ‘wires’. When the myelin sheath is damaged the signals are not conducted properly resulting in malfunction of the nerves. Any nerve of the body may be affected causing a variety of effects.
Q:What part of the body is usually affected most?
A. As mentioned earlier, any nerve in the body may be damaged. For example, if the optic nerve is damaged, it may lead to temporary or permanent blindness. If the nerves to the limbs are damaged you may have difficulty in walking or in doing daily mundane tasks like buttoning your blouse or even signing your name. If the nerves to the bladder are damaged you may have urinary incontinence.
Q:Who are those most vulnerable to developing this condition and why?
A. MS is very rare in childhood. It first appears in young adulthood, between 20-30 years of age, and is much more common in females. Although the reason for this preference is unknown, many immune-mediated diseases have the same pattern.
Q:Has it any link to one’s genes? Can one inherit it if a close relative has it? What are the chances?
A. Most patients with MS do not have any relatives with the disease. However, people who are related to someone with MS do have a slightly higher risk of developing MS. Most people’s risk of getting MS is about 1 in 750. But if a close relative like your mother, father, brother, or sister has the disease, your risk jumps to 1 in 40. And if you have an identical twin with MS, it soars to 1 in 4.
Q:Trauma or injury to the brain?
A. The risk of getting MS after a head injury is very small. The vast majority of people who have MS do not have a history of brain trauma. However, there is a small increased risk.
Q:Is it curable?
A. There is no cure for MS. However, early diagnosis and treatment can help to speed up recovery from attacks and slow the progression of the disease. In fact, some people have such mild symptoms that no treatment is necessary.
Q:Are there any new treatments that can help manage the disease and enable a better quality of life for patients?
A. Treatments for MS include 1) Medicines that reduce the duration and severity of acute exacerbations 2) Disease modifying therapies that slow the progression of MS and 3) Medicines for specific symptoms. Treatment has to be individualised for each patient depending on their stage of disease and symptoms.
Q:Where can low- income patients obtain these treatments free of charge?
A. All neurology wards and clinics in state hospitals offer these treatments free of charge.
Q:What are the symptoms to look out for at the early stage of onset?
A. MS is difficult to diagnose as most symptoms are non-specific and vague, such as fatigue, clumsiness, difficulty walking, incontinence of urine. Therefore, the patient’s family may think that the person with early MS is just being lazy or clumsy. Even doctors may not identify the disease at this stage. There is a need to sensitise all types of doctors, including general practitioners, to make them more aware of MS.
Q:Can they be reversed or delayed with early treatment?
A. Early treatment can slow down progression and prevent relapses.
Q:Will eating a healthy diet help?
A. Yes. Leading a healthy lifestyle including good nutrition, regular exercise and adequate sleep is as important as medicines. A healthy diet is good for all members of the family and should include whole grains, a wide variety of colorful vegetables and fruits, a variety of lean proteins and beans, legumes, nuts, and seeds. Limit intake of saturated fats, sodium, added sugars, highly refined foods, and avoid trans fats entirely.
Q:Does exercise help?
A. Moderate exercise can help to preserve muscle strength and joint flexibility while ensuring that you maintain a healthy weight. People with MS can benefit from at least 30 minutes of physical activity at least three days a week. However, exercise that is too aggressive can bring on severe fatigue and injury and exacerbate symptoms. It is important to keep cool during exercise as overheating can worsen the symptoms of MS.
Q:What are the symptoms at a later stage?
A. Trouble with balance and posture may increase making mobility difficult and restricting the patient to his own home. Vision loss and difficulty in speech may reduce independence. Some patients develop depression that may need medical treatment.
Q:Do patients have to be warded while undergoing treatment?
A. Patients are usually warded only during acute relapses where they may need specialised care and injections such as steroids. However, in between, they can continue with their normal lives, while taking their regular disease modifying therapies
Q:Since it is not curable, how is MS managed?
A. The person with MS should register with the neurology ward / clinic in the state hospital closest to their home and attend the clinic regularly. During these visits the doctors will assess the progress and inquire about any new symptoms that need treatment
Q:As we are moving forward in the high technology field, have any new treatments been found to help manage MS disease and enable a better quality of life for patients?
A. There are some experimental treatments such as stem cell transplantation to replace the entire immune system of the body and arrest the disease. However, they are still undergoing testing and are not approved for general use.
Q:Since connections and enabling patients to enjoy quality lives is the central theme, what are the main obstacles patients face in achieving this goal?
A. People with disabilities in Sri Lanka (not just those with MS but even the elderly) find it difficult to use public transport and are forced to hire private transport to attend to their daily work, visit places of worship and participate in social activities such as weddings and funerals. This limits their participation and can lead to social isolation and depression.
Q:Since MS is a form of disability, what are the problems that patients face socially? Do they feel isolated? Do they feel society treats them differently?
A. Some patients complain that society blames them for their illness and relatives and colleagues accuse them that this is their fate, for having committed sins in past births. This attitude is very hurtful and stigmatising. It is important for people, including young children, to treat people with disabilities with compassion and care.
Q:The focus is on ‘Connections’ which is the central theme for World MS Day 2020 – 2023. What is the significance of this theme for MS patients globally and in Sri Lanka?
A. People living with MS, like everyone else, need family, work and friend networks to live a full, happy and contented life.
Q:So since MS Connections, as the theme implies, is all about building community connection, self-connection and connections to quality care, how will you as President of the Multiple Sclerosis Association of Sri Lanka set about achieving this end?
A. We have founded an association of people living with MS to educate and empower Sri Lankans with MS. Through this association, MS patients and their caregivers are connected to others through Whatsapp, telephone and social media.
Q:Briefly tell us what led to the formation of the MSAL?
A. The Multiple Sclerosis Association of Lanka (MSAL) was founded in 2006 by Dr Hithaishi Weerakoon, a doctor with MS. She met a lot of patients in the clinic who felt isolated and neglected and brought them together to form a patient centered organisation that works to improve the quality of life of MS patients and their caregivers. Through this association, MS patients have made friends and act as a support group to each other, sharing their experiences and coping strategies and encouraging each other.
The caregivers can also use this platform to share their difficulties with each other and learn from each other.
Q:Is it a Ministry of Health approved charity? Who funds it?
A. The MSAL is affiliated with the Multiple Sclerosis International Federation. We work closely with the neurologists to complement hospital and clinic care with home-based occupational therapy and community-based physiotherapy.
It is a registered company with audited accounts. It is funded by raising funds from well-wishers and donors.
Q:Your message to the MS community?
A. The MSAL would like to invite all persons living with MS to join the MSAL and contribute to its activities. We would be grateful if doctors who care for MS patients would refer them to the association or send us their names and addresses. There are no costs or expenses incurred in joining the MSAL
Q:Is there a contact number if a reader wishes to reach you?
A. Multiple Sclerosis Association of Lanka
111, Inner Flower Road
Colombo 3
Sri Lanka
Tel: +94-777319333
Email: [email protected]