It was almost unbelievable! There were these attractive, smiling women (and a couple of men, too), gathered in one room and except for the lady who was in a wheel-chair, you’d never have guessed they were all afflicted by the incurable disease known as "Multiple Sclerosis".

I spoke to a lady whose long gown and head-scarf identified her as from the Muslim community. I had to ask her whether she was a patient, because her pleasant aspect and demeanour gave me no clue. She told me she was, and that her 13-year-old daughter who was seated by her, was only 8 years old when she (the mother) was diagnosed with MS. The comparatively young woman in the wheel-chair smiled as she told me she had known some of my children when they were all members of the same Youth Fellowship many years ago.

Across the table from me was this sweet-faced lady, her care-giver husband at her side. They puzzled me because her husband wore a sombre expression and she was smiling. She surprised me when she informed me that she was the patient. Her husband, too, smiled then and even made a joke.

A little later on, a pretty lady came and sat down near me. I had thought her face looked familiar when she came in, but I couldn’t place her. "Auntie, can you remember me?" I had to admit I couldn’t. Then she said, "I am a friend of Anusha’s" (my youngest daughter). "We were classmates. I’ll give you a clue. I was in Dale House and I was good at athletics." It still didn’t ring a bell and she had to tell me her name which I recognized at once. "Are you a patient?" I asked, for there was no way I could tell at a glance. "Yes", she replied.

These people, along with several others comprising patients and caregivers, friends of the MS Association of Sri Lanka and office-bearers and volunteers of the Association, had met that day for a "MS Get Together to celebrate World MS Day." The programme had been well arranged. There were talks, a sumptuous lunch sponsored by Baur & Co., (thanks to the unflagging interest in the Association shown by their Mr. Mahaname Dodampegama); there was singing and time for fellowship.

I learned that the pleasant young lady seated at the table behind me was not a patient, but one of the Baur’s team and she confided that she was very happy to participate in "something so GOOD", as she put it.

Seated across from me was Shrahi Bongso, well-known physiotherapist who gives her expert services to the patients. I was happy to meet volunteer Ellen Silva who, I knew, also serves as a volunteer with WIN two days of the week. Something that was very heart-warming was that a number of Hithaishi’s school friends had rallied round her and become involved in the MS Association. Nuala Thevathason and Dr. Enoka Corea (nee Perera), were two such, serving as Hony. Secretary and Asst. Secretary of the Association. Another classmate who wholeheartedly offers her services is Ruanthi, a daughter of former LC Principal, Sirancee Gunawardena.

I was struck by the snowy white tablecloths covering every table, with a bowl of flowers at the centre of each, and when I mentioned that to Hithaishi she told me it was Ruanthi who was responsible.

Present also was the President & some members of the Zonta Club 11 of Colombo which actively supports the MS Association and which had arranged a special programme at the Holiday Inn, Colombo, to mark the first ever `World MS Day’ declared by the Multiple Sclerosis International Federation (MSIF) as May 27th this year.

Prof. Lalitha Mendis, Executive Director of the MS Association, in her address, explained that MS is a chronic neurological disease caused by damage to a protective sheath called Myelin that surrounds nerve fibres of the central nervous system, Demyelination, (the name by which the damage to myelin is called) interferes with messages between the brain and other parts of the body. The speed at which the disease progresses varies from patient to patient, but the end result is often that the sufferer is confined to a wheelchair, or is bed-ridden. MS is a chronic, lifelong condition and since it generally affects comparatively young people who have a normal life span, care has to be provided for several decades.

Prof. Mendis said that while there is no cure at present, there is ongoing research as to what causes MS. Therapies are being tried to encourage re-myelination and a return to the previous level of function before an attack and also to prevent fresh attacks and disability. Patients have to learn to extract whatever joy they still can, from life.

The MS Association gives hope in that sufferers find they are not isolated. They are able to meet other MS patients and learn from one another’s experiences how some have coped through thinking positively despite the illness. She also emphasized the importance of the caregiver’s role. "People generally inquire after the patient, but few give a thought to the stress undergone by the caregiver, or consider her/his need of a respite."

Prof. Mendis held up the Association’s Founder - President, Dr. Hithaishi Weerakoon, as a great inspiration to others in the way she reaches out to bring hope and help to fellow-sufferers with MS, and invited her to speak.

Hithaishi, who uses a walking stick, is a mother of two children She said that she first felt the symptoms when she was only 24 years old. "My feet felt like plastic, my face was numb and I had difficulty in coordinating my movements. Initially, I felt depressed, but gradually, I realized that it was not the end of the world and that I needed to change my way of life in keeping with these new limitations."

Hithaishi was a lecturer at the Medical Faculty in Peradeniya University when the diagnosis of MS was confirmed. She had to give up work she enjoyed and it also meant loss of earned income. "I determined to get the most out of life." She chose to do something positive to help others in the same condition as herself by forming a support group, having discovered that many patients didn’t know how to cope and that, in rural areas in particular, patients are kept hidden because the disease is seen as the consequence of past sins, or as a punishment from the gods. She tries to put the MS slogan, "Getting the Most out of life," into practice.

A film was shown of patients abroad who had found ways of coping with their restricted life-style. Amazingly, an American woman with MS is currently attempting to climb Mt. Everest and an interview with her was shown. This courageous woman said she wanted to show that a MS patient could attempt to climb a mountain! It seemed to us viewers that the important thing was not whether she succeeded or failed, but that she had the spunk to make the attempt.

The MS Association of Lanka (MSAL), was founded in 2006 and is affiliated to the Multiple Sclerosis International Federation (MSIF). It is funded solely by donations and fund-raising efforts. It’s stated objective is to provide support to persons with MS and to their families. MS meetings are held every month in Colombo and there is an active branch association in Kandy which caters to patients in the surrounding rural areas.

Programmes at MASL meetings vary. Talks by Neurologists are sometimes arranged. Discussions with physiotherapists and other service providers, are very helpful to people with MS symptoms. Patients are given an opportunity to talk about their problems and share their feelings and experiences. Information regarding MS is given. Wherever possible, assistance is provided for the purchase of drugs and needed equipment.

Membership is free. There is a telephone help line: 0779219099. E-mail: msalinfo@yahoo.com.