“People with muscular dystrophy are just like everyone else, but with a lot more challenges than the average person and with the right support, we can live meaningful lives too.”
Timothy Chan, member of MDAS
A genetic condition that sees progressive muscle weakness and degeneration – muscular dystrophy and its symptoms are impossible to ignore.
Affected individuals may lose their ability to walk over time, and simple everyday activities – much of which we take for granted, become harder and harder to accomplish.
However, navigating the world with this disability does not have to be a joy-robbing endeavour.
In light of Flag Day with MDAS (Muscular Dystrophy Association (Singapore)), we speak to Timothy Chan, a member of MDAS with muscular dystrophy and shine a spotlight on what it looks like to live your best life despite setbacks faced.
- Tell us a bit about yourself and your story.
Hi, I’m Timothy and I’m currently 32-years-old. I was diagnosed with Duchenne muscular dystrophy at age 5 when I started to walk strangely and found myself falling easily. Despite my condition, I graduated with a degree in product design and after that, landed my first job at a robotics maintenance company as well.
- What is muscular dystrophy?
Muscular dystrophy is a genetic disorder characterised by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin, which is what helps keep muscle cells intact. As a result, your muscles shrink over time and become weaker, which can affect your ability to walk and take part in daily activities, like swallowing food for example.
- What was your experience adjusting to your diagnosis like?
When I was younger, I started to walk strangely and fall easily – which was when my parents took me to see a doctor and I was diagnosed with Duchenne muscular dystrophy after a biopsy. It wasn’t easy at first and it was hard to accept along with the feelings of isolation and frustration that came with the condition. It can be discouraging at times to be unable to do things by myself and have to increasingly rely on a caregiver for my daily needs, but slowly, I learned to be more patient and take everything one step at a time.
- How has the rehabilitation process been like for you?
Muscular dystrophy is not an illness you can recover from and is a condition that can be managed through certain interventions such as medication, surgery, physiotherapy and healthy living. However, the process remains tough because what we can do is to try and maintain ourselves, but the reality is that we will still get weaker despite the efforts. We simply have to learn how to continuously adapt, adjust and make the most of what we have.
- What are some misconceptions that you think people have about muscular dystrophy?
Many people have the false belief that we can only live up to 25-years-old and that we live a sad life being unable to do anything, but that’s simply not true. We are the same as everyone else, and with the right support, we can achieve living a meaningful life too!
- What is MDAS and how are you involved in it?
MDAS is an organisation that provides care and support to people with muscular dystrophy in Singapore through programmes and services like life-skills training, sports, social activities, health education, physiotherapy, respite care, and even financial-related assistance to empower us and enhance our quality of life.
When I was about a year into my job, I fell sick and my health deteriorated. Along with some other reasons, I decided to leave my job and that was when I became more actively involved in MDAS and volunteered to be part of a human library to educate the public about muscular dystrophy at their annual muscular dystrophy awareness carnival. I’m currently involved in the MDAS Bridge programme where I learn graphic design and design greeting cards.
- Why do you think MDAS is important?
MDAS helps improve the quality of life for people with muscular dystrophy, as they have for me, allowing me to expand my skill sets with graphic design training and work, as well as support me physically, mentally and socially through art programmes, physiotherapy sessions and social activities that allow me to meet others who are going through similar circumstances as well.
- How has your life changed since you got involved in MDAS?
Besides allowing me to make many good friends, the activities at MDAS have also allowed me to develop confidence in myself as well as a sense of purpose knowing that I can contribute and help make a difference in the lives of others.
- Why do you think it’s important that more people know about MDAS?
Besides contributing financially so that MDAS can continue to make a difference in the lives of people with muscular dystrophy, general awareness about muscular dystrophy and what it’s like to live with the condition is also important so that we can be more inclusive as a society and support them to live their best lives. And of course, we hope that a cure can be found one day.
- What is one message you want to leave with our readers?
If there’s one thing I want to say, it’s that people with muscular dystrophy are just like everyone else, but with a lot more challenges than the average person and with the right support, we can live meaningful lives too.
MDAS was founded in 2000 with the mission to maximise the quality of life of people with muscular dystrophy and their families, to integrate them into society and support medical research towards a cure.
At Marina One, we are committed to making a difference and supporting charity organisations that instil life skills to the members, helping them to reach their fullest potential. Support our E-Flag day happening in the month of May to help raise funds for MDAS. Your generous donations will go toward supporting their operating expenditure that covers the provision of programmes, services, and all supporting costs for over 500 beneficiaries. Your support makes all the difference.
To donate, please visit: http://give.asia/mdasflagday2022xmarinaone