One person’s battle with MS and a lot of help from friends
View(s):The birth of the Multiple Sclerosis Association of Lanka (MSAL)
Having attended Ladies’ College in Colombo and become a doctor, she was happily married, with two children. As time went on, certain symptoms disturbed her but she was determined not to let them get the better of her or rob her of her happiness.
Being a doctor, her research led her to believe that her body was being invaded by a rare disease, which would change her life forever.
MSAL marked World MS Day with an awareness programme at the Sathutu Uyana on June 10. Here the members are strolling back to the Cinnamon Gardens Baptist Church. Pic by Indika Handuwala
Consultations with specialists, several tests and an MRI scan confirmed her worst fears. She was diagnosed with Multiple Sclerosis (MS), an immune-mediated inflammatory disease, rare in the tropics, that attacks myelinated axons in the central nervous system, destroying the myelin and the axon in variable degrees and producing significant physical disability.
She was devastated but determined to fight it, with her husband and children always with her as her ‘crutches’ to carry her over the many obstacles which came her way. She also decided to turn to her childhood friends, her classmates from Ladies’ College, who were a close-knit group. They met often and had a lot of fun together. She needed support and could rely on them.
“When we went to see her, she stood there with her trademark smile on her pretty face. Her three-year-old daughter peeped from behind her skirt, while her five-year-old son was kicking sand beside her. She was attempting to be normal and soften the blow when she told us the news,” friends recall.
For them, her words that day still echo: “I have been diagnosed with Multiple Sclerosis — an incurable disease which is degenerative and would affect my ability to see, think, walk and move, ending up with my being bedridden. The doctors have given me 10 years to live.”
“We were determined to help her in whatever way we could. Having got over the initial shock, we turned our attention to supporting her determination not to let her condition get the better of her and to make her as happy as we could. ”
She discovered, during her many visits to her neurologist, that there were many more people in the country affected by the same disease but who had been told it was a “mystery disease”. These people were from different strata of life. They were scared as they did not know about the illness and they felt isolated as they did not know how to cope or what to do. She was determined to help them.
The friends say: “On her initiative, we formed a support group for patients with MS and informal meetings were held in her home for a few months. With help from a company from where her husband bought her drugs, a support group was established and seeing her genuine desire to help other patients, a pledge of a monthly contribution was made with no strings attached.
A not-for-profit company was formed and the Multiple Sclerosis Association of Lanka (MSAL) was born, formalizing the monthly meetings of MS patients. Being an incorporated company, the rules of the Registrar of Companies are strictly adhered to and the accounts audited.
Every month, a neurologist would explain the illness to these patients and tell them what to do and what not to do. Being the initiator and a patient herself, she would stand before them and tell them not to be afraid. She was a role model to them. She showed them that she would not allow MS to beat her.
She showed them how she was “Getting the MoSt out of life”, and how they could too. Currently, MSAL, a voluntary organization funded solely by the generosity of donors and through fund-raisers, has over 90 patients from all parts of Sri Lanka as members.
While maintaining details of all patients registered with MSAL, it also helps needy patients to purchase wheelchairs, crutches, commodes, pampers, mattresses etc; assists them financially with the purchase of drugs; builds ramps for wheelchairs and hand railings; renovates houses to make them differently-able friendly; helps pay for the physiotherapy which is required to keep MS patients mobile and prevent them from getting bedridden; and assists with the education of their children.
MSAL also visits patients to help them overcome anxiety and depression.
MSAL welcomes people who would like to be friends of MS to contribute in the following manner:
By spending valuable time to assist MSAL
By assisting in finding jobs for MS patients
By creating public awareness on the disease
By helping MSAL as part of a corporate social responsibility project
By making financial donations to assist patients
Twenty-five years after being diagnosed with MS, she still smiles with her eyes sparkling and her pretty face all aglow. “We take her to parties, cricket matches and functions. She laughs and enjoys the jokes and lives every crazy moment of ours,” her friends say.
Still determined not to let MS takeover, still fighting her slurred speech, her slow pace and bad handwriting and her forgetfulness, she sports a smile which says: “I will not let it get me!”
| Get to know more about MSAL To know more about the Multiple Sclerosis Association of Lanka, please visit the website: http://www.mssrilanka.org or email: msalinfo@sltnet.lkDonations may be sent to Account No: 1100037477 at the Reid Avenue branch of the Commercial Bank of Ceylon PLC, followed up with an email for administrative purposes. Crossed cheques could be made in the name of ‘Multiple Sclerosis Association of Lanka’. | |