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‘I have to move forward now’

Twenty five-year-old Manal Hussain Ghulam was diagnosed with Beta thalassaemia when she was six months old.

Manal, who has nine siblings, shares the gene with three of them. Both her parents are carriers of the gene, but were not aware of it until their first thalassaemic baby showed a deformity in her facial structure when she was a year old.

“There wasn’t much awareness (about the gene) back in the day,” said Manal, who is pursuing a course on broadcast journalism at Ajman University.

She said that although only three of her siblings have thalassaemia, all 10 of them are carriers.

From an early age, Manal has had to go for blood transfusions every three to four weeks, depending on her haemoglobin level. The challenge was the absence of a thalassaemia centre in Ras Al Khaimah, where Manal’s family resides.

“The biggest challenge for us was to go for blood transfusions. The injection has to be taken in the thigh and we had to skip school because our thighs would get swollen and we couldn’t move,” she recalled.

Despite having supportive parents, their lack of understanding of the disease left them constantly worried about their children and restricted them from playing sports and other activities.

“Several exhibitions such as these increased awareness about how thalassaemia patients can live normal lives. The only thing they have to do differently is go for blood transfusion sessions regularly,” Manal said.

Despite her condition, Manal said she has lived “almost” a normal life as she had the support of her friends and family.

Manal is determined not to pass on her disease to her children and has made it a pre-condition for her future husband to not be a carrier of the thalassaemia gene.

“I would like to be a successful person in anything I do, and in order to do that, I have to challenge myself. I overcame my disease, now I have to move forward,” she said determinedly.

To her fellow thalassaemic patients, she said that they have to look after themselves and follow their treatment procedure.

“If they don’t, they won’t be able to live normal lives,” she warned.

Manal has been awarded a scholarship by Shaikha Shaikha Saif Mohammed Al Nahyan, Chairperson, Emirates Thalassemia Society and Board Member, Thalassemia International Federation (TIF), to continue her further studies. She also expressed her thanks to the UAE government for providing free treatment for thalassaemia patients like herself.

Manal was in the capital this week to attend the TIF 2013 World Congress and the 15^th TIF Conference to learn more about the latest discoveries made in the research on thalassaemia.

olivia@khaleejtimes.com