What would you do if your tongue suddenly stopped functioning, and you lost the ability to speak or eat? This is exactly what one woman had to deal with for years.
Myasthenia Gravis. Those words were completely foreign to social worker Mariza Abdul Kadir, 47, when she was diagnosed with the chronic autoimmune neuromuscular disease. While there are no known risk factors, it is estimated that the disease usually affects women between the ages of 20 and 40.
The most noticeable symptom is weakness of the eye muscles. Other symptoms can include difficulty in swallowing and slurred speech. Mariza had already experienced symptoms of the illness since she was in her 20s – but she did not think much of it as they were mild. “My eyes would twitch and my dry coughs were prolonged – at least, that's what I thought they were.
However, my eyesight worsened and I started seeing twos and threes of everything. “And then there was this swallowing issue – it was so bad that there was a running joke among my friends that I needed a bib, as I was constantly spilling things all over myself! “Still, I did not think anything of it until one day when I realised that I could not gargle.
Eventually, even swallowing my food or speaking became a laborious task. “It was about four years ago that my doctor referred me to a neurologist, who diagnosed me with myasthenia gravis.”
RELIEVED BY THE DIAGNOSIS
To finally know what the problem was brought great relief to Mariza. “Up until that point, I had spent months panicking as I did not know what was going on with me. Getting the diagnosis finally meant that someone knew something about what was really going on with me,” she says. However, what Mariza did not realise was how the disease would affect her life. It was only months later that she found out there was no cure and that all she could do was work hand in hand with doctors to manage her symptoms.
COPING WITH THE ILLNESS
Mariza asked to go on steroids as part of her symptom management, but this also caused her to put on a lot of weight, and she did not want that to keep happening. “The doctors decided to put me on immune suppressors instead,” says Mariza. “I cannot even begin to tell you how terrible that made me feel.
It is such a struggle, because it completely kills my immune system. This means I cannot be anywhere near someone sick. I cannot even have food poisoning because it could kill me! “Once, I was around someone who was having the flu. I thought I had kept a distance. Apparently not! Within one and a half days, I was in the hospital for suspected pneumonia.”
HOW IT CHANGED HER LIFE
For someone suffering from myasthenia gravis, the more muscles they use, the weaker they become. This meant that Mariza’s day-to-day functions were completely altered. As a busy social worker, Mariza had to quit her job due to the stress caused by her illness. “Everything is affected – from sitting up and walking to not being allowed to drive or take a flight. I cannot do anything for extended periods of time – even talking!
“In the last few years, it got so bad that I could not control my eating or drinking. It got to the point where I had to stick my hand in my mouth to push the food in or pull it back out! “It has impacted my life right down to the most basic things that we take for granted, like eating, breathing or even just blinking!”
About Myasthenia Gravis
Professor Dr Nortina Shahrizaila, consultant neurologist at University Malaya Medical Centre explains the illness.
“This disease is relatively rare. Research shows that the estimated prevalence was at 78 per million based on a study done until 2010,” says Dr Shahrizaila. “It is an autoimmune neuromuscular junction disorder. This means the patient develops antibodies that act against the receptors that receive signals at the nerve-muscle junction.
There is a ‘block’ if the signals from nerve to muscle result in weakness. So if a patient’s breathing muscle is affected, they stop breathing. If their swallowing muscles are affected, they cannot swallow.” Based on various cases Dr Shahrizaila has dealt with, patients have gone for up to two years without being diagnosed. “It depends on the severity of their symptoms. If their muscle weaknesses fluctuate, it can be hard to diagnose if the doctor is not familiar with the illness.”
Mariza getting her blood test done after a round of clinical treatments. On days where she doesn’t have any treatments, Mariza spends time catching up with friends!
Mariza’s posts on social media often includes her showing her gratitude for all the things she has in her life.
TAKING LIFE ONE DAY AT A TIME
The illness could have easily dampened Mariza’s spirits, but she has not allowed it to do so. She can often be seen sharing on social media about the little things that she is grateful for every day – things most of us take for granted.
“Every day is a struggle just to do things everyone takes for granted, like breathing, swallowing, talking, walking and even opening my eyes... but I am determined to stay well. I may be sick, but life is good,” says Mariza.
PHOTOS COURTESY OF MARIZA ABDULKADIR.