26 years ago, Mia was born with Thalassaemia major, a chronic and genetic blood condition. Fast forward to today, she overcame all the odds stacked against her to lead a life she never thought she could ever have: a husband, three beautiful children, and running three small businesses. We spoke to Mia as she shares her story and her ultimate goal of bringing more awareness to Thalassemia to Singaporeans and beyond.
This Muslim Woman Aims To Raise Awareness Of Thalassaemia
The First Diagnosis
Credit: Courtesy of Mia
While her mother was carrying Mia, doctors found out that her mother has Thalassaemia minor, and further medical checkups on her father also diagnosed him as having the Thalassaemia minor trait too.
Thalassaemia is an inherited blood disorder caused by an abnormal gene. A person with thalassaemia is unable to produce normal, functioning haemoglobin in the blood, which is important in carrying oxygen from the lungs to all parts of the body.
When the body does not produce enough normal, functioning haemoglobin, the affected person suffers from anaemia. In many cases, anaemia is mild, but it can also be serious and life-threatening. According to HealthXchange, a health and lifestyle resource portal by SingHealth, thalassaemia is the most common genetic condition in Singapore, with about 5 per cent of the population, or 1 in 20 Singaporeans, estimated to have thalassaemia minor.
If both parents have a Thalassaemia minor, there’s a 25% chance that their child will have a Thalassaemia major, according to the Ministry of Health Singapore. The difference between both is the severity of the symptoms. Those with Thalassaemia major, like Mia, may experience constant fatigue, have pale or yellowish skin, and are required to go for regular blood transfusions.
Trying To Be ‘Normal’
Credit: Courtesy of Mia
While Mia counts herself lucky for having a supportive and understanding circle such as her parents, teachers, employers, and husband, she didn’t like having to plan her life around her illness.
“It really feels so troublesome that I have to plan my days around my blood transfusions”, she explains. Mia has to go for blood transfusions once every three weeks.
“I spent the whole day at the hospital for every single transfusion, and I realised I could have done a lot more things if I was a normal person without thalassemia,” she added. Apart from transfusions, she also has to eat 3 different types of medications each day.
For a busy woman running three small businesses on the side while working at her fast-paced day job as a retail staff in a reputable company, and managing her 3 young children there’s a lot of pressure for Mia to find a balance between her responsibilities and taking care of herself. Especially on days when she has to go for transfusions, she gets even more tired, which sometimes gets her frustrated that she can’t do all of her day-to-day activities.
“I just try to accept and live with it. I keep reminding myself that I am one of the lucky ones,” she said.
Creating Thalassaemia Rockstar
Throughout her life, she has dodged questions after questions about Thalassaemia, and never really felt the need to address them, but it took a random video on her Tiktok that inspired her to increase the awareness of her illness.
“It was about a couple who broke up because they found out that they both have Thalassaemia minor and didn’t want to continue the relationship because they don't wanna face the ‘risk’ of having a child with Thalassaemia”, she explained.
“I felt upset, because it reminded me of myself, the ‘risky’ product of my Thalassaemia minor parents”, she added. To Mia, it felt wrong that other people who have Thalassaemia may not have the same opportunity as she does in being in a relationship or getting married.
“It didn’t make sense that people with Thalassaemia can’t fall in love and get married, right?” she questioned. She decided to switch up her TikTok account, which she first used to promote her beauty businesses, and opened up about her illness in November 2021.
It immediately blew up, and she has now garnered 1.3 million views on TikTok. She then begins to break down other stereotypes faced by people with Thalassaemia, just like her.
“For starters, many users kept suggesting to me that eating more beef spleen or chicken liver will improve our blood count. It actually doesn’t! We depend on blood transfusions, and if we excessively eat beef spleen or chicken liver, our bodies don’t have the capacity to break down such high contents of iron. We can consume it though, but in moderation.” However, with a growing presence on social media, it brings along some negativity.
The Good, The Bad And The Ugly
Credit: Courtesy of Mia
“There were a couple of comments telling me to stop bringing children to the world, and saying that I should stop bringing this illness into the gene pool for future generations,” she recounted. Recently, one even said that they would rather be dead if they had Mia's condition.
She felt that such comments come from a place of doubt, not hate. “I know it’s difficult, especially if you really want to have a child and you have Thalassaemia, but it still doesn’t mean you shouldn’t try for a child,” she explained.
“But to me, this is just up to fate. The odds of having a child with Thalassaemia major is 25%. But what about the other 75%? Sometimes we just have to take the leap of faith and hope for the best to work out. Look at me, I have a Thalassemia major, and I am blessed with 3 children,” she added. Her husband does not have the Thalassaemia trait.
She hopes that in 2022, she can create more content and motivate people to be educated in this condition so that they can find a way to better support people with Thalassaemia instead of spreading misinformation.
Thankfully such comments like this are just a handful, and she has been able to connect with many others who also have Thalassemia in Singapore and globally, whom she lovingly calls her “Thal rockstars”.
Advice To Fellow Thal Rockstars
Credit: Courtesy of Mia
“If you really wish to try for a child, take the Thalassemia screening test. It’s a simple blood test, you can do at KK Hospital’s National Thalassaemia Registry. Afterwards, make the decision best suited to your and your spouse,” she advises.
She added a motivational quote that is truly one we can hold on to for life: “Tough times don’t last, tough people, do. It will always be tough for us, but we will always come out stronger.”
If you wish to understand more about Thalassemia, or you’re looking for fellow Thal Rockstars, you can check out her TikTok or Instagram page!
P.S. Here are some inspirational stories right from our own community: