‘I connect, We connect’: Changing lives of Multiple Sclerosis patients everywhere | Sunday Observer

‘I connect, We connect’: Changing lives of Multiple Sclerosis patients everywhere

Multiple Sclerosis is an autoimmune condition, with very serious adverse health impacts on the patient. With no cure for this disabling neurological condition affecting mostly young women in the prime of life they are currently living amid fears and anxieties stoked by the spread of the Covid-19 outbreak. The Sunday Observer asked the President of the Multiple Sclerosis Association of Lanka , Microbiologist and Senior Lecturer Faculty of Medicine, University of Colombo Dr Enoka Corea how MS patients could still enjoy a quality life despite their disabilities.

Excerpts…

Q. World Multiple Sclerosis Day (MSS) was observed yesterday. What aspect of this disabling condition did you focus attention on this year?

A. The theme for World MS Day 2020 is "Connections". The campaign is all about building community connection, self-connection and connections to quality care. The campaign tagline is ‘I Connect, We Connect’ and the campaign hashtag is #MSConnections.

Q. Although considered one of the most disabling diseases affecting a person many people remain ignorant about it as it is not a very common condition. Tell us what Multiple Sclerosis is.


Dr Enoka Corea

A. MS is an autoimmune condition. This means that the immune system, which normally helps to fight off infections, mistakes its own tissues for a foreign body, such as a bacterium, and attacks it. In MS, the immune system attacks the myelin sheath surrounding the nerve fibres (demyelination). Myelin is like the insulation round an electric wire. This damage to the myelin sheath disrupts the 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. What triggers or causes this demyelination is not fully understood. As the nerves link all bodily activities, many different symptoms can appear in MS, depending on which part of the nervous system is affected.

Q. What are the main nerves affected? Can it cause a shutdown of the entire nervous system?

A. Any or many nerves can be affected. Commonly the nerves to the bladder, the eye and muscles are affected resulting in incontinence of urine, poor eyesight, clumsiness and difficulty in walking. The symptoms can be very vague and may just be easy fatigability that others may interpret as laziness.

Q. Is there a National Registry to identify how many Lankan persons are suffering from MS?

A. Recently, a national research organisation for MS, namely, the Sri Lanka Committee for Treatment and Research in Multiple Sclerosis or SLCTRIMS was established. They will be conducting research on the prevalence of MS in Sri Lanka. However, at present we have around 125 members registered in our Association. They are from all parts of the country.

Q. Do you think there could be many more than this number if you include unidentified patients across the country who hesitate to come for treatment?

A.I am quite sure we are only seeing the tip of the iceberg. Going by the rates of MS seen in our neighbouring countries, such as India, there are probably a minimum of 1,000 MS patients in Sri Lanka.

Q. How far has stigma and myths about the disease and a sense of fatality that accompanies the family of an MS patient contributed to preventing early treatment and detection?

A. Many Sri Lankans view chronic illnesses such as MS as due to sins committed during previous births. Therefore they do not empathise with the patient and may stigmatise the patients and his/her family. We have seen the same attitude during the Covid-19 pandemic as well, where the victims of the viral infection were stigmatised and their families harassed. So it is quite likely that many patients do not reveal their condition and do not come for assessment and follow up.

Q. Gender wise and age wise who are most at risk of getting it?

A. MS is more common in women. It usually starts when the person is in his / her 20s or 30s and then gradually progresses.

Q. Why?

A. It is unknown why MS strikes some people and not others. There are many hypotheses such as vitamin D deficiency or infection with viruses such as the Epstein Barr virus but nothing has been proved as yet.

Q Today we live amid fears of a new, highly contagious disease Covid-19 which is fast spreading. What will be the effects of fear and anxiety of becoming a victim of the disease in a person with MS?

A. Covid-19 is asymptomatic to mild in the majority of infected persons. However, it can be severe and even life threatening in those with underlying disease. So in the patient with MS who already has many medical issues, Covid-19 can have a more severe effect.

Q. Symptoms to look for?

A. Blurred vision, fatigue, weak limbs, difficulty walking, incontinence of urine, problems with memory, numbness or tingling.

Q. Any other fall outs from this condition?

A. In addition to its physical symptoms, MS may have profound emotional consequences. There is often anxiety over the risk of progressing over time to some level of physical disability. Mood changes, extreme irritability and depression are common.

Q.I understand that signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms. Is this correct?

A. There are four types of multiple sclerosis (MS), named according to the way the disease acts on the body over time. Relapsing -remitting MS is the most common form of multiple sclerosis. Here, there are short or long periods of time between acute episodes, during which the illness remains silent. These periods are called remissions. However, each acute attack (relapse) can result in damage to the nerves and this accumulates over time.

Q. Will early detection prevent it?

A. There are newer treatments that may help to slow down the progress of the disease and increase the length of the remissions. However, there is no cure at present.

Q. How does the disease progress?

A. Every time there is an acute attack or relapse, certain nerves become damaged. Therefore, after the acute attack has improved there is some residual nerve damage. So each time there is a relapse the disease progresses.

Q. Can Multiple Sclerosis be cured?

A. There is no cure for multiple sclerosis. Treatment focuses on speeding recovery from acute attacks (relapses), slowing the progression of the disease and managing MS symptoms.

Q. Are there new treatments that can manage the disease and help the patient to have a better quality of life? Are they available in Sri Lanka?

A. There are some new treatments that have been shown to slow the progression of the disease. A few of these treatments or disease modifying therapies (DMTs) are available in Sri Lanka. One of the objectives of SLCTRIMS will be to recommend newer therapies to be registered and made available in Sri Lanka.

Q. You mentioned lack of vitamin D and low exposure to sunlight is a risk factor. Why?

A. This is not a proven fact but only a hypothesis to explain why MS is more common in temperate countries. The hypothesis explains that MS is more common in temperate countries and is less common in tropical countries, such as Sri Lanka, because the greater exposure to sunlight in tropical countries results in adequate vitamin D (due to the action of UV light on the skin).

Q. Non communicable diseases (NCD) are rapidly overtaking communicable diseases in Sri Lanka. If an MS patient suffers from some chronic NCD can this aggravate her already compromised nervous system?

A. Yes. The more medical conditions you have, the more symptoms and signs you will have. This, in turn, may be further complicated by the side effects, toxicity and interactions of the drugs taken for multiple conditions. Smokers too have a higher rate of risk of MS.

Q What about heart problems, hypertension, kidney problems etc?

A. There is no increase in those conditions in persons with MS.

Q. MS patients need 24 hour round the clock care in their advanced stages. Are there facilities to provide that kind of assistance to such patients in Sri Lanka?

A. In Sri Lanka, most MS patients are cared for by their families, at home. There is minimal government assistance for these brave and selfless care givers. We should salute them for the job they are doing to make MS patients comfortable and happy.

Q. I understand that you are the President of the Multiple Sclerosis Association of Lanka (MSAL). What led you to form this Association?

A. The MSAL was founded by Dr Hithaishi Weerakoon, who was diagnosed as having MS in her 30s. She took the initiative to collect the MS patients from government clinics and bring them together to form a support group. She is still the main liaison person between the MSAL and the members.

Q Do you work with the Health Ministry or as an independent NGO? If so how do you get your funding?

A. MSAL is a registered company with audited accounts. It is affiliated to the Multiple Sclerosis International Federation and is a voluntary organisation funded by donations and fund raising activities of the Association.

Q. Are there training programs for nurses and doctors on dealing with MS patients in the current medical curriculum?

A. There are no specific training programs on MS in the current syllabus. However, it is good to train doctors and nurses on the care and rehabilitation of patients with chronic, progressive conditions such as MS including training postgraduates in the field of disability and rehabilitation.

Q. What are the shortcomings or gaps you see in caring for MS patients in our health system? How can they be remedied?

A. There is a great need to develop a community based nursing and physiotherapy services that are delivered directly to the homes of patients with chronic illnesses who find it difficult to travel regularly to hospitals for treatment and physiotherapy. This will benefit other patients as well as MS patients and help to train the caregivers to give effective therapy at home.

Q Do you have a message for our readers with MS patients under their care amid the Covid-19 outbreak?

A It is important not to expose the patient with MS to the risk of getting Covid-19. Therefore, visits to the home by outsiders should be minimised and good hand hygiene should be practised by family members who go out for work or to do household shopping.

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