Dr Hithaishi Weerakoon

Country: Sri Lanka
Age: 44
Profession: Doctor
Type of MS: Secondary progressive
Year of diagnosis: 1997



My name is Hithaishi Weerakoon and I am a doctor in Colombo, Sri Lanka. I am married and have two children aged 13 and 11. I call my children my ‘living walking sticks’ as they support me so much.

In retrospect, I first noticed symptoms of MS when I was 24; my right leg felt like plastic and I could not feel my foot. I also experienced periods of numbness in my face, these lasted for about two weeks and then disappeared altogether – I thought it was all psychosomatic.

While reading for my Masters in Community Medicine in 1996, I experienced numbness in my feet, an inability to pick up things from the floor or hold papers and difficulty in coordinating my hand movements. It was very confusing as my hand carrying food would often go to my forehead or cheek rather than to my mouth. It was when I had a minor car accident that I decided to seek medical attention. I was diagnosed with MS at 34. I strongly feel that stress was a contributory factor to my MS. My progressive form of MS meant I had to stop lecturing at Peradeniya University and was left without an income.

When diagnosed I initially felt depressed. I tried to ignore it and carry on as usual, but fatigue got me down. I was unable to drape my saree (traditional clothing worn by women in countries such as India and Sri Lanka), wear earrings or apply make up and this made me feel worse. I was unable to tell anyone of these small things as I felt no one understood. I gradually realised that being diagnosed did not mean the end of my life; it simply meant the beginning of a new way of life.
I was determined to share my experiences with as many people with MS and their families as possible, and to help them seek ways to improve their quality of life.

MS is increasingly being seen in countries close to the equator. In Sri Lanka MS is often referred to as the “mystery disease” because of the wide range of symptoms and delayed diagnosis. There is also a lot of social stigma associated with the disease. Many families do not acknowledge the condition, keeping family members with MS hidden or attributing it to sins committed in their past life. Due to ignorance of the disease, I think many people are yet to be diagnosed while many of those with a diagnosis of MS have to face rejection from family members and friends. These attitudes have to change.

The Multiple Sclerosis Association of Lanka (MSAL) was established on 19 September 2006 to raise awareness of these problems and to provide physical and emotional support to individuals and families, including children, affected by MS. We want people with MS to get the most out of life and to hold their heads up high with dignity. The 40 current members consist of 20 people with MS, plus their family members, friends, supporters and doctors.

MSAL hopes to raise funds to train nurses, attendants and family members and provide rehabilitation services, counselling and support. We hope to campaign for disability cards for people with MS so they no longer have to queue for a hospital appointment and provisions are made for them on public transport. Our distant dreams are to establish day care and respite centres for MS patients. The Zonta Club (an international charitable foundation supporting the work of women) has assured us that they would be supportive of our efforts in formulating a respite centre for MS patients 30 km away from Colombo.

Since the formation of MSAL, and as its President, I have interacted with other people with MS and their families in Colombo and across the country. I gained Tamil and Sinhala language skills through my work in ante-natal and child welfare clinics for people from remote areas, which have helped me to communicate and relate to many more people with MS.
If this disease is diagnosed at its inception the patient has a chance of escaping its tentacles. However, diagnostic procedures involving MRI and/or lumbar puncture are lengthy and expensive and are only offered in a few hospitals.

Treatment available in Sri Lanka includes the disease modifying drug Interferon and steroids for relapses but again both are highly expensive. In Sri Lanka reflexology, yoga, Feng Shui, Tai Chi, massage and meditation, or a combination of such therapies, under medical supervision have shown some benefits that could prevent permanent disability.
Currently there is no support from the government for people affected by MS as it is not considered an illness worthy of support. MSAL, through its awareness campaigns, hopes to get the disease recognised so that government funds can be made available to subsidise treatment costs for medication such as Interferon.

We do not want families to give up on their loved ones, for if you believe there is no hope, you have lost the game. Adapting to life with MS can take time. But I firmly believe that a positive attitude, appropriate health care and support can manage these conditions well and improve one’s quality of life.
























Pictured above at MSAL's benefit showing of the film Guru in March 2007 are (l-r) Nuala (Honorary Secretary), Prof Lalitha Mendis (Executive Director), Dr Hithaishi Weerakoon (President), Christabel O (Patron) and Dr Enoka Corea (Honorary Assistant Secretary).

For information and assistance in Sri Lanka, please contact:

Multiple Sclerosis Association of Lanka
144 Vipulasena Mawatha, Colombo 10, Sri Lanka
tel: + 9411 077 921 9099, 9411 2 698722
e-mail: MSAL