14-year-old Veydaant Shah has the rare Duchenne Muscular Dystrophy condition which makes him a wheelchair user. He shares with us his thoughts and dreams.
Please tell us a bit about your condition
I didn’t ever run like normal kids, and when I turned 7 years, I already had difficulty in walking fast and a helper was required to hold my hands while walking around in school. By 10 years I was using a wheelchair. I have Duchenne Muscular Dystrophy and have read about in on internet.
When were you diagnosed?
When I was around 3 yrs.
What were the early symptoms?
I was not running like normal children, and I was taking time in getting up from the floor.
Is there any history of Muscular Dystrophy in your family?
No
What is your present condition?
I am currently in a wheelchair, without full upper body movements either. Its difficult to even lift a 500 ml water bottle.
Please describe your experience of managing this condition?
Sometimes I feel low seeing other kids of my age, who are gradually growing big and tall. To me, my wheelchair constitutes my legs to roam around in the house. But I have to be totally dependent on my parents for doing many activities.
Any related complications?
No
What medications are you on?
Many Drugs and Supplements.
Were there any side-effects of the medicines?
Yes, because of these medicines, my height has not increased. I have become Moon Faced. And I also have to daily administer eye drops to avoid getting cataract.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
The challenges are many, Like the inability to travel to any place, to go to restaurants which don’t have ramps or lift facilities. Also, toilets in most places are not wheel chair friendly. In school too, kids go out to play while I have to sit in the classroom.
One has to be strong and fight it out and try to do all the things which we love to do. We also have to learn to ignore insensitive people who make fun of us without understanding the hardships we are forced to go through.
What kind of specialists do you consult and how often?
I have been going to different doctors, from a neurologist, to a cardiologist, a pulmonologist, and even an endocrinologist.
What resources are available to you in your city to help you manage the condition?
For recreation, most places are out of bounds for me by not being wheelchair friendly.
On the medical side, though, good doctors and hospitals with all major facilities are available.
Have you had to make some changes to your lifestyle because of your condition?
I am learning to accept the condition I am in and trying to making the best out of it.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No
Has it been difficult emotionally to cope with your condition?
Yes
How has your family supported you?
My parents and my sister are always there for me, to take me out everywhere, to give me company , to motivate me to do things, help me in all my daily activities.
Did you see a counselor for support? Were you offered counselling by doctor?
Till date not done any counselling.
How did your friends treat you? Were you isolated?
I have just 2-3 good friends. Yes quite often I have felt isolated. But I do realise that they also need to go and play and cannot be confined to one place all the time like me.
What was the hardest part of the treatment? What kept you going? How has this changed your life perspectives and ambitions?
My parents are trying to find some treatment for me and they are always there to motivate me. I want to study medicine, but with my current condition I know it wouldn’t be practical. So now I am planning to join the commerce stream.
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Read other narratives of Duchenne Muscular Dystrophy
RS Anand: My son's rare disease has made us stronger humans
Hitesh Chowhan: A wish for a magic wand to shoo away my son's Duchenne Muscular Dystrophy
