Structured care programs – key to improving lives of MS patients – Sunday Observer

Neurologists across the world recently observed World Multiple Sclerosis (MS) Day. Described as one of the most serious neurological conditions affecting a person, and afflicting largely young women in the prime of their lives, the condition continues to remain sidelined.

To get more insights into this silent stalker The Sunday Observer spoke to the President of The Multiple Sclerosis Association of Lanka (MSAL), Prof. Enoka Corea currently working at the Department of Medical Microbiology and Immunology, Faculty of Medicine , University of Colombo to tell us what causes this condition, how it can be controlled and how those living with MS can enjoy a more productive life by seeking early enrolment in a structured program offering tailor-made treatments.

Excerpts

Q. As Multiple Sclerosis is still a relatively little-known condition, tell us what exactly it is in laymen language.

A. Multiple Sclerosis is a neurological disease where the immune system (which is meant to fight infections) suddenly starts attacking your nerves. Any nerve of the body may be affected. For example, if the optic nerve is affected this may lead to temporary or permanent blindness. If the nerves to the limbs are affected, you may have difficulty in walking and in doing daily tasks like buttoning your blouse or even signing your name. If the nerves to the bladder are affected you may have urinary incontinence.

Q. Why does it happen?

A. 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 or 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.

Q. Is it a chronic condition?

A. Yes. It is a long term illness but progression of the disease can be controlled by adopting a healthy lifestyle, taking certain medicines and doing exercise or physiotherapy. As MS patients dont usually have to be warded, it is preferable to call them people living with MS rather than as patients.

Q. Who are most at risk of developing this condition gender wise and age wise?

A. MS usually starts in young adults, between 20-30 years of age and is much more common in females.

Q. Is it curable?

A. There is currently no cure for MS. However, the disease is often slowly progressive and patients may not have many acute episodes.

Q. Can it be managed and controlled?

A. In patients with frequent relapses, newer disease-modifying agents have been developed that may help to slow down progress and delay or even eliminate the acute episodes.

Q. As we move forward to a hi-tech world, are there any new treatments that can help manage the disease and give patients a better quality of life?

A. Lifestyle modification , taking a nutritious diet, frequent exercise and relaxing with family and friends have been shown to improve quality of life. The newer disease-modifying drugs provided by MS clinics in the state hospitals also help to manage the disease.

Q. Is MS inherited? What are the risks of a sibling of child of one with MS developing it?

A. MS isnt directly inherited, but people related to someone with the condition are slightly more likely to develop it; the chance of a sibling or child of someone with MS also developing it is estimated to be around 2 to 3 in 100.

Q. If a pregnant mother develops MS will her unborn child be affected?

A. While MS usually does not affect the unborn child, pregnancy can affect the progress of MS in the mother. Usually MS improves during pregnancy but symptoms may increase after delivery of the baby.

Q. Any recent data on the number of people living with MS in Sri Lanka?

A. A study conducted by neurologists estimated a crude prevalence of 7.78 cases of MS per 100,000 population in Sri Lanka. However, it is likely that many of them have not been diagnosed due to lack of awareness among people and doctors.

Q. Are there different types of MS? If so, what are they?

A. There are different clinical types of MS that are described, based on how rapidly the disease progresses. The most common type of MS follows a relapsing, remitting, course. This means that there are acute episodes where MS flares up and the disease progresses over a short period of time (relapses). The symptoms that occur during these relapses gradually improve but there is usually some residual nerve damage. This is followed by varying periods of quiescence where the disease remains inactive (remittance). Then after a short or long period MS flares up again (relapse). However, these relapses can be reduced or even prevented by treatment.

Q. How is it diagnosed?

A. There is no specific diagnostic test for MS. Diagnosis is based on a careful examination by a neurologist who will attempt to exclude other causes of nerve damage. An MRI scan is also necessary. There are criteria laid down by international consensus and the disease is diagnosed if the person fulfils these criteria.

Q. Who is able to evaluate and diagnose the disease? Can a general practitioner do this?

A. The symptoms and signs of MS are very vague and include fatigue, clumsiness, difficulty walking, incontinence of urine etc. Therefore, it is difficult for even doctors to identify. Therefore, it is important to increase awareness of MS among all types of doctors, including general practitioners. Once MS is suspected, a specialist neurologist has to be consulted to confirm the diagnosis by special tests including imaging by an MRI scan.

Q. When should a person with MS symptoms seek professional advice?

A. Professional advice from neurologists at dedicated MS clinics in the state hospitals should be sought as soon as MS is suspected or confirmed. They will register the person living with MS at such clinics and follow them up closely, using a team-based approach along with nurses, physiotherapists, occupational therapists. Early detection and enrolment in a structured care programme will help to detect complications early and prevent or treat them. A holistic approach involving the person living with MS and the whole team will ensure a tailor made treatment programme to enable the person to live a productive life.

Q. Are there different stages in the progression of MS?

A. There are three main types of MS - relapsing, primary progressive and secondary progressive. There are some patients who do not have remissions after the first acute episode but progress continuously (progressive MS). Most people have a relapsing progress where they may have few to many acute episodes (relapses) and short to long periods where the disease is quiescent (remissions). Sometimes this relapsing remitting type may develop into a progressive type (secondary progressive).

Q. New treatments to manage the disease ? Where are they available?

A. The initial treatments (disease-modifying drugs) for MS were given by injection. But now, a range of oral therapies have been developed. These treatments are available in the state hospitals and are provided free of charge to people with MS.

Q. If an MS patient suffers from some chronic Non Communicable Disease (NCD) can this aggravate her already compromised nervous system?

A. Non-communicable diseases such as diabetes or hypertension affect health and wellbeing and can add to the health problems present in MS. It is very important for MS patients with such NCDs to carefully control these diseases and maintain a healthy lifestyle.

Q. Given their limited abilities, what kind of exercise do you recommend to keep healthy?

A. Exercise can help improve symptoms of MS and slow the progression of the disease. People with MS can benefit from 30 minutes of physical activity at least three days a week. It is best to take a moderate approach. Avoid overheating as this may increase symptoms such as numbness and tingling but this will disappear once you cool down.

Q. Although the number of Covid-19 patients in Sri Lanka has reduced, we still face the risk of exposure to other emerging and re-emerging contagious viruses. How vulnerable are MS victims to these infections?

A. Having MS does not usually make people with MS more susceptible to viral infections. However, some of the disease modifying therapies can suppress the immune system. Since having a viral infection can make activities of daily living more challenging it is best to prevent them by avoiding people with colds and coughs and frequent had hygiene.

Q. What is the ideal approach to caring for such patients?

A. People living with MS should be encouraged to live active, productive and independent lives in the community. However, if disability interferes with carrying out activities of daily life, they may be cared for at home. Ideally, MS nurses should visit such patients in the community and advise on their care.

Q. As the President of the Multiple Sclerosis Association of Lanka (MSAL) briefly tell us why it was formed, by whom, and what its goals are.

A. The Multiple Sclerosis Association of Lanka was founded in 2006 by Dr. Hithaishi Weerakoon, a doctor with MS. She met several 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. Gaps in delivering optimal care to MS victims and how you wish to fill them?

A. Care for MS patients should be delivered at their homes, in the community, and not in hospitals. Ideally, dedicated MS nurses and physiotherapists should conduct regular home visits and deliver individualised care directly to the patients. They can also train the caregivers in the home setting. Occupational therapists can advise on strategies to improve mobility such as installing ramps and rails in the house.

Q. The theme for World MS Day 2020-2023 is Connections and the campaign tagline is I Connect, We Connect. Tell us more about this theme and how it applies to giving Lankan MS patients better quality care?

A. The MS Connections campaign is all about building community connection, self-connection and connections to quality care. Connections challenge social barriers that leave people affected by MS feeling lonely and socially isolated. It is an opportunity to advocate for better services, celebrate support networks and champion self-care.

Q. Your message to the MS community in Sri Lanka?

A. The MSAL invites 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. Where can they reach you?

A. Multiple Sclerosis Association of Lanka

111, Inner Flower Road Colombo 3 Sri Lanka Tel: +94-777319333 Email: [emailprotected]

Originally posted here:
Structured care programs - key to improving lives of MS patients - Sunday Observer