Chock full of hope for patients with Chronic Myeloid Leukemia

The support group allows patients to openly discuss their experiences, and gives them the opportunity to raise queries with doctors.

A section of the audience at the Chronic Myeloid Leukemia (CML) meeting held at JW Marriott Marquis hotel in Dubai on Saturday. — KT photo by Grace Guino

A support group bringing together patients, doctors and social workers, to discuss the ins and outs of life with Chronic Myeloid Leukemia (CML) has come to the UAE for the first time, with one attendee describing the session as “a helpful aid” in managing the condition.

Initiated by Friends of Cancer Patients (FoCP), the debut five-hour session kick-started on Saturday morning, with talks of future meetings already in the pipeline for 2014.

A condition which is chronic rather than terminal, CML is a cancer of the white blood cells and affects one or two in every 100,000 people. One sufferer who attended Saturday’s Patient Support Group at the JW Marriott Marquis hotel in Dubai was 29-year-old Egyptian, Mahmoud Ibrahim.

First diagnosed with CML back in February 2012, Ibrahim said it was great being able to share his experience with other patients, and is looking forward to future support meetings with FoCP.

“I learnt so much more about my condition today”, he told Khaleej Times’ reporter on Saturday. “It’s great to talk to other sufferers and see how they are coping with CML. I’ve asked the organisers to keep me updated on future events like this. I think it’s been very good.”

Working as a sales representative for a pharmaceuticals company, Ibrahim said he was already aware of the condition prior to his diagnosis, and thankfully he hasn’t had to alter his lifestyle too much since finding out he is a sufferer. “I wasn’t worried when I was given the diagnosis because I knew a bit about the disease already. My weight did fluctuate a little in the beginning, but now I manage just fine. I barely notice any change compared to before,” he said.

Aimed at increasing awareness of CML, FoCP’s support group allows patients to openly discuss and share their experiences as sufferers, and gives them the opportunity to raise questions or queries with doctors who specialise in the condition.

FoCP’s secretary-general Dr Sawsan Al Madhi, who spoke at Saturday’s debut session, described the turn out on the day as “phenomenal” and lauded the patients’ willingness to share their story with others. “I am very happy FoCP initiated this support group and it was obvious today, that the need was there.”

Adding that the patients were the “core” of the meeting, Dr Al Madhi said she hopes it will help create a domino effect for other support groups to be rolled-out in the future.

“We tied the first session in with World Cancer Day which falls on February 4. Initiatives like this can help educate those directly affected by cancer and offers them the support they need whether it be financial, emotional or psychological.”

CML is one of the few cancers that a patient can live with on lifelong medication and Dr Al Madhi said the message they wanted to deliver was clear.

“A patient does not need to cease life if they are diagnosed with CML. They can carry on being a mother, father, businessman…they just have to manage the condition correctly, and that’s what the support group teaches them.”

In a bid to gauge feedback on the session and get suggestions for possible future topics of discussion, Dr Al Madhi said the patients got “right on board” and sparked up some interesting ideas.

“One person was keen to talk more about diet. But not in terms of maintaining weight, in terms of using food as a type of medicine. It’s really only patients who can raise suggestions as interesting as this,” she said.

Medicine costs for CML sufferers can often reach between Dh120,000-150,000 annually. As the first support group of its kind in the UAE focussed on this particular cancer, Dr Al Madhi said it was important they created a social and relaxed atmosphere for the patients.

“We wanted something away from the hospital setting, where patients can feel at ease. Today’s session has stirred up lots of great dialogue and I’ve been amazed with the turn out and participation.”

Referring to the Patient Support Group as the “pilot session”, Dr Al Madhi said the FoCP are planning to host three of four more meetings this year alone.

kelly@khaleejtimes.com