A Sickle cell disease (SCD) advocate has raised concerns about a growing number of couples allegedly choosing to marry despite being at high risk of passing the genetic condition on to their children.
Bahrain Sickle Cell Society chairman Zakariya Al Kadhem told the GDN that one possible reason may be changing family dynamics in the marriage process.
According to him, grandmothers in Bahrain previously played a more active role in advising families during marriage discussions and were often more cautious about approving unions where both partners carried the sickle cell trait.
SCD is a genetic condition that results from mutations in the gene holding the information to produce the beta-chain of haemoglobin (the molecule in our body that carries oxygen through the body).
The disease leaves patients prone to a number of acute and chronic health problems such as infection, attacks of severe pain known as ‘sickle-cell crisis’ and stroke.
“Grandmothers in Bahrain would refuse to allow a marriage if there was a high risk and would push couples to undergo pre-marital screening,” he said.
“They would even insist on not attending the wedding. However, after Covid, when many grandmothers stopped going out, or sadly passed away, they had less influence because they were no longer attending engagement parties and wedding ceremonies.”
Mr Al Kadhem, who works to raise awareness across the kingdom and helps to manage cases involving high-risk couples, said he has noticed a shift among some parents.
“A new generation of mothers is sometimes supporting marriages even when the genetic risk is high,” he said, adding that it shocked him that there are mothers who would allow their child to go through this.
“While it is not extremely common, I have noticed a slight increase,” he claimed. “Before, I would see all the mothers standing beside me and advising against the marriage. Now there are some who stand beside the daughter and against the doctors,” he said.
He attributed part of the change to concerns among parents that their children may struggle to find a partner, particularly as many women are experiencing delays in receiving marriage proposals.
“I understand their concerns, as parents don’t want their daughters to grow older without getting married,” he said, adding that these worries can be addressed, while still ensuring everyone remains safe.
“Choosing to go ahead with a high-risk marriage means making a decision that could affect your children for the rest of their lives.”
Mr Al Kadhem said the situation has strengthened his determination to continue raising awareness about the condition in Bahrain, which affects around 9,000 people in Bahrain.
“I just have to work harder to shift their perspective and help them understand,” he explained
Mr Al Kadhem, who himself has struggled with SCD, said he has even arranged for visits for couples considering marriage to genetic counsellors at Salmaniya Medical Complex, where they can learn more about the condition and its impact.
He added that while not everyone chooses to attend, the visits can help couples better understand the consequences of their decision.
SCD significantly affects the daily lives of those living with it, primarily through chronic, unpredictable and intense pain, as well as severe fatigue.
Patients can experience pain crises, which are sudden, unpredictable and excruciating episodes of pain that occur anywhere in the body, most commonly in the back, joints, chests and limbs.
They can last for days or weeks. A normal day requires constant vigilance, including plenty of water to prevent blood cells from sickling, taking daily medication to prevent crises and avoiding extreme hot or cold temperatures. This affects daily school and life routines as well as long-term health and life planning.
It is not illegal for couples with sickle cell trait or sickle cell disease, however, to marry in Bahrain.
While premarital screening is mandatory to identify high-risk couples, the law does not prohibit, restrict, or ban couples from proceeding with the marriage.
Here are the details regarding the legal and medical guidelines:
Mandatory Testing: Under Law No. 11 of 2004, all couples planning to marry in Bahrain must undergo a premarital medical screening to check for hereditary blood disorders, including sickle cell anaemia and thalassemia.
Voluntary Decision: If both partners are found to be carriers or have the disease, they are referred for mandatory genetic counselling at the Salmaniya Medical Complex, but they are not obliged to accept the advice or abandon their decision to marry.
Counselling Focus: The programme focuses on educating at-risk couples on the high probability of passing the disease to their children and discussing options for managing reproductive risks.
Medical Options: Many couples who are both carriers proceed with marriage and utilise advanced options such as in-vitro fertilisation with preimplantation genetic diagnosis (PGD) to have healthy children.
While some proposals have suggested stricter measures for hereditary diseases, currently, the decision remains with the couple.
As a genetic, lifelong condition, it requires consistent, often daily, self-management to avoid life threatening complications.
Mr Al Kadhem has travelled all over the world, including the UK, US, Oman, Saudi Arabia and more, to hold talks to spread awareness about SCD.
julia@gdnmedia.bh
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