#trending: 'Selfless' doctor couple in Malaysia ends engagement after learning both carry thalassemia, an inherited blood disorder

SABAH, MALAYSIA — A couple in Malaysia have broken off their engagement after finding out that they are both carriers of thalassemia, a blood disorder passed on from parent to child, which can lead to anaemia and require regular blood transfusions.

Ms Farra Diana, 27, took to Twitter to share their heartbreaking story on May 27, stating that her former fiance Ashraff had told her "early on" that he was a thalassemia carrier.

But neither party, who are both doctors at a Kota Kinabalu hospital, saw that as an issue as they never guessed that she would also carry the abnormal gene.

According to HealthHub, Singapore's national health information and services portal, a person who has inherited one thelassemia gene is said to have thalassemia minor and can lead a normal, healthy life without even knowing that they have it.

However, they can still pass on the thalassemia gene to their children.

A person who inherits two thalassemia genes — one from each parent — has a 25 per cent chance of having thalassemia major, a severe form of anaemia which leads to poor growth and development as well as a shorter lifespan.

Anaemia is a condition where one has low levels of red blood cells that carry oxygen in the body.

Dr Farra and Dr Ashraff began dating in June last year and held their engagement party on Jan 22 this year. After that, Dr Farra decided to go for a thalassemia screening.

"I got checked after we (got) engaged, 'just to be safe', I thought," she wrote on Twitter in a mix of Malay and English. "And (it) turns out I'm also a carrier.

"So the risk of major thalassemia is there. And we can't afford the uncertainties."

People with thalassemia major can require a blood transfusion every month, and the only possible cure at present would require a bone marrow transplant.

During a stint at the hospital's paediatrics department, both doctors had also had firsthand experience with "many transfusion-dependent thalassemia children", Dr Farra said.

She continued: "We remembered the children we cared for, that we had to poke (needles into their veins) every night, and they needed to depend on blood transfusions.

"They were also rebellious. They expressed things like: 'Why am I sick like this when it's not my fault?'"

It was around February to March when they first found out, said Dr Farra. Eventually, after a few months of difficult discussion, they decided to part ways.

Though Dr Farra agreed with Dr Ashraff's sentiment that they "shouldn't be selfish" and should "feel sorry for (their) future baby", she was still hoping for a "miracle".

"In the end, we both agreed this is the best way," she wrote.

In an Instagram Story post, Dr Ashraff expressed the same sentiments: "Thank you for the past one year. It was such a beautiful memory which I will always keep in my heart. Knowing you was the best thing that ever happened to me.

"But God's plan is better. Never (thought) that we (would find out) both of us are (thalassemia) carriers. I've tried, I've cried. But here I am letting you go.

"I wish you all the happiness in the future. I will always love you. Thank you Farra, thank you my love."

Netizens have responded to the couple's story with an outpouring of support and sympathy. Since being posted, Dr Farra's Twitter thread has received 1.6 million views, 5,300 retweets and 2,600 comments.

"Crying at you two selfless people, I'm sending you so so much love," read the top reply on Twitter. "May Allah ease all that you do today, tomorrow and forever."

Fellow thalassemia carriers also shared their own stories, saying: "I know how frightening it feels."

One said: "In my family, my father and mother are both carriers. Even when they got married, there was no check for thalassemia at that time. Three (of their) children have thalassemia.

"My sister entered UIA (International Islamic University Malaysia) but had to leave because of (thalassemia)."

Others, including Dr Mohd Faizal Bin Ahmad, an obstetrician-gynecologist at the UKM Specialist Centre in Kuala Lumpur, advised Dr Farra to try different methods such as going for genetic counselling or in-vitro fertilisation.

The next morning, Dr Farra tweeted: "Woke up with so many discussions and solutions. Believe me, we've talked about this much longer than any of you know.

"And yet, the frightening outcome of 'what if' is above it all."

They had also asked specialists, their seniors and colleagues, but wondered if "agreeing to marry for love only is sufficient" when their child might have health issues. Though adoption was an option as well, both doctors wanted their "own baby".

"In the end, every decision has its own consequence," she added. "This is not a cheap a** drama."

Still, Dr Farra thanked everyone for their kind words on Twitter and Instagram, apologising that she did not "have the courage yet to respond". In another tweet, she urged people to get checked for thalassemia "before regretting things like (her)".

In a follow-up tweet on Monday, she said that people around her had also thanked her for raising thalassemia awareness with her viral thread, and she was glad for it.

She had not told her story to discourage thalassemia carriers from getting married, she explained, but to ensure that people are "aware of all the possibilities and prepared for them".

"Many have never checked, find out that (their) child (has) major thalassemia and feel guilty for life," she added. "Our story doesn't want to tear apart any relationship, you know... it's an awareness, for a better future."