Herself a victim of this disabling disease, Dr. Hitaishi Weerakoon heads an association that aims at creating awareness about MS and supporting those affected both physically and emotionally
By Esther Williams
Considered invalid or disabled, MS (Multiple Sclerosis) sufferers are often written off as being no longer of any use to anyone. It does not help that the disease, owing to its complexity and variety of symptoms is not easy to diagnose. Nevertheless, research indicates that medicines and alternative therapies are available to reduce the severity of the illness.
The Multiple Sclerosis Association of Lanka was established on September 19 last year to bring awareness of this problem and provide support – physical and emotional to individuals and families affected by the disabling neurological disease. Among the 40 members comprising patients, their family members, friends, supporters, patrons and doctors, 20 are diagnosed patients.
Explaining their mission, President of the Association, Dr. Hitaishi Weerakoon says, “We want patients to get the most out of life and hold their heads up with dignity.” She hopes that through the association people around the country would be informed about it and realise that something can be done about the mystery illness, so called because it is not known how or why it occurs and what the treatment is.
MS apparently affects its victims in various ways – a patient could gradually become blind, lame or paralyzed. While some symptoms such as walking difficulties and rapid blinking of eyes become obvious to other people, others such as pain and fatigue are considered invisible or silent symptoms. It is worth noting that the inflammatory disease is not infectious or hereditary.
The exact cause of MS is unknown although environmental factors, stress and genetics may play a contributory role. Nevertheless, it could affect anyone, though it is commoner in women between 20 and 40. MS that formerly occurred in countries of the cool temperate climatic zone is now increasingly being seen in countries close to the equator, and is referred to as the Asian MS.
The most perplexing factor related to the illness is that not only does it come on insidiously, symptoms such as numbness occur for some time and disappear before re-occurring in 2-3 weeks. These are referred to as periods of relapses and remissions. “Patients hence disregard their symptoms or hesitate to go to the hospital, associating it with stress or a psychosomatic disorder.”
An MS sufferer herself, Dr. Hitaishi, who graduated from the Medical Faculty of Peradeniya battled the symptoms for several years: numbness in her feet, inability to pick up things from the floor or clutch papers and difficulty in co-ordinating hand movements. “My hand carrying food would go to my forehead or cheek rather than my mouth,” says she, recalling the confusion she felt. It was when she had a minor accident, hitting a car coming in the opposite direction though she was driving slowly that it dawned on her to seek medical attention. She was diagnosed with MS at 34.
Having actively participated in forming the association, Dr. Hitaishi has since then interacted with other patients and their families in Colombo and across the country. Due to ignorance about the condition, many, she thinks are yet to be diagnosed while those with the condition seem to have faced rejection from family members and friends.
Of the social stigma associated with the illness, she says, “Many families do not acknowledge the condition, keep their patients hidden or attribute it to sins committed in their past life. This attitude has to change,” she reiterates. MS can also cause breakdown in the family structure, affecting children psychologically, financially and in every area of development and education.
“If this disease is diagnosed at its inception the patient has a chance of escaping its tentacles,” Dr. Hitaishi reiterates. However, it appears that diagnostic procedures involving MRI (magnetic resonance imaging) and/or lumbar puncture (extracting a cerebrospinal fluid for testing) are lengthy and expensive, offered in a few private hospitals only. “A gamut of clinical investigations involving a neurologist has to be done before it is diagnosed,” she explains.
Treatment includes the highly expensive disease modifying drug – Interferon and steroids for relapses. Reflexology, yoga, magnetic field therapy, Tai Chi, massage or a combination of such therapies under medical supervision have shown some benefits that could prevent permanent disability.
Since being diagnosed with MS, Dr. Hitaishi has shown tremendous courage and determination and hopes that other patients would do likewise. Adapting to life with MS can take time. But a positive attitude, appropriate health care and support can manage these conditions well, improving one’s quality of life, she firmly believes.
The association hopes to raise funds to build awareness, train nurses, attendants and family members, provide rehabilitation accessories, counselling, and support and eventually run a hospice. “We do not want families to give up on their affected members for if you believe there is no hope, you have lost the game.”
For information call: Hitaishi: 077 9219099, e-mail: hitaishi@sltnet.lk
