Muscular dystrophy: ‘Children used to call me different names when they saw me in a wheelchair
It is said that the memories of childhood always remain with a person because at that age a person learns to walk and establish relationships with people, but if a child’s childhood becomes painful and he loses the ability to walk, then Throughout his life he suffers from feelings of inferiority because he cannot play and walk like other children.
Something similar happened to 22-year-old Amina from Karachi. Amna suffered from a disease called ‘muscular dystrophy’ due to which she is now unable to walk.
Amina is working as a brand manager in a multinational company, but she says that people see her wheelchair, not her skills.
“I didn’t even think of coming in front of the world, I didn’t put pictures of myself on social media because I knew people would see my wheelchair and not me.”
Before knowing Amina’s story, it is important to understand that there is a disease called ‘muscular dystrophy’.
What is Muscular Dystrophy?
There are several types of muscular dystrophy. It is a disease caused by genetic changes.
Symptoms in people with this disease include muscle weakness and loss of mobility over time. Due to which difficulties are faced in daily activities.
The process of diagnosing muscular dystrophy involves examining the patient’s symptoms, medical history, and family history of the disease.
Initially, there was not much awareness and awareness about this disease in Pakistan and due to this lack of awareness, many people thought about this disease that it is polio.
Something similar happened to Amina, when she initially faced problems, some doctors in Pakistan told her parents that their daughter had polio.
Decision on treatment abroad
Amina says that ‘my parents were educated and they did not find this talk of the doctors appropriate and they were not ready to believe that it was polio after seeing my condition and illness.
‘After all this my parents decided to take me to America for treatment where the doctors told them I had muscular dystrophy.’
Amina was diagnosed with this disease when she was just two years old and when she was twelve, the disease took away her ability to walk, but Amina’s problems did not end there.
After that, he was diagnosed with another disease called ‘psychosis’ or in the medical language it is also known as ‘multi-system disorder’.
The symptoms of this disease include fever, cough, fatigue and rapid weight loss. Medical experts also believe that the lungs are the first to be affected in 90% of people after contracting the disease.
When Amina suffered from ‘psychosis’, the disease affected her spine and she became crooked. As with ‘psychosis’, it is said that this disease affects different people in different ways. In some cases, this spinal cord is so severely affected that both the legs are paralyzed.
“When I got admission in the school, the children saw me in a wheelchair and called me different names.”
“I don’t remember ‘crawling’ (walking on my stomach and knees) like normal children, even when I tried to raise my hands, they felt lifeless,” says Amina.
Amina had a different childhood than normal children, she had to learn to fight her disease, or think about how she would live with this disease, not only that, but she also had to understand that she was different from other children.
“That time was very painful and difficult, because I never got my childhood back.”
If it is said like this, it will not be wrong that Amina’s real life started from the day she learned how to live with this disease. Lack of awareness in developing countries often leads to increased difficulties for these children.
“When I got admission in the school, the children started calling me different names after seeing me in a wheelchair because for them my existence was a strange object.”
That time was very difficult but Amina found a way to move forward, accepted her illness, physical condition and condition and started making people aware about it.
Amina’s life had somewhat improved by the time she reached university, but she was still suffering from the disease. The only difference was that she had learned to live with it all.
Success in academics and the start of ‘Miss Match’
Amina excelled in academics, bagging a gold medal in BBA and setting an example for others like her to believe that being in a wheelchair does not mean that one cannot achieve one’s dreams. .
Today, Amina runs a group on Facebook called ‘Miss Match’, where there are others like her, along with her job.
Amina says that with the help of this group, she helps people with diseases learn from each other how to get a good job, or if someone wants to learn a skill, how to fulfill their dream. can
The group was started by Amina in June this year, after which people gradually joined it. In Pakistani society, there are different views on walking difficulties, in some cases people hide it, as several people in this group expressed to Amina.
Amina’s parents could not teach her to walk after this disease, but they definitely taught Amina to fly without wings and gave her the freedom to go and fight against the negative attitudes of the society.
She says that ‘My parents said to go out and fulfill your dreams, and if you stumble, there is no need to panic, we will be with you every moment. I think this kind of confidence is needed by every person like me so that one can move forward successfully.
Now, if we talk about Amina’s success, she has spoken about her disease on many international occasions and is working to spread awareness and awareness among people because she feels that the facilities she got and like her His parents trusted him with help not available to many. That is why Amina is becoming the voice of these people.