Arthritis Dubai: January 2009

Khaleej Times Online >> News >> NATION Perils of Juvenile ArthritisAsma Ali Zain

7 January 2009 Print E-mail
DUBAI - When five-year-old Mustafa Atef started to moan of pain in his knees and legs, his mother, Abeer, dismissed his complaints, chiding him instead for wanting to skip school.

It was only when the complaining became frequent and Mustafa’s knee joints became swollen that his 40-year-old mother took notice.

“I did not take his complaints seriously, thinking he might have hurt himself while playing,” explains Abeer. But she and her husband, Atef Lasheen, became extremely worried, she recalls, when day-by-day Mustafa’s condition started worsening and his legs became swollen and stiff.

For six months, the Egyptian couple ran from pillar to post. “It was a nightmare. Doctors treated him for a heart condition but no one here seemed to know what was wrong with Mustafa while his condition seemed to worsen, especially during the morning time,” she explains. It was during a trip to Egypt three years ago that Mustafa was diagnosed with Juvenile Idiopathic Arthritis or Rheumatoid Arthritis, a relatively rare disease affecting 0.5-1 per cent of children worldwide.

“We did not believe this diagnosis one bit because I remembered my grandmother complaining of knee pains and my five-year-old could not possibly have it,” she says, sill in disbelief.

Over the six months time until he was diagnosed, Mustafa changed from a happy child to a dejected one. He was in constant pain; could no longer play with his friends as he used to earlier and, even worse, his legs couldn’t bear his weight anymore.

It was also a frustrating time for the couple and their elder daughter who have been living in Sharjah for the past 14 years. “Handling a boy of his age and trying to explain to him why he was different from others was really a trying time for us,” says the mother. He became increasingly grumpy, moody and withdrawn.

“My heart ached to see him turn from a lively boy to a grumpy, bedridden lad,” says Abeer. Wintertime was worse. Mustafa had to wear double layers of clothes but still could not lessen the pain and stiffness in his joints.

For nearly a year after his diagnosis, Mustafa, now eight and a Grade 3 student of Westminster School, could not attend school. “I missed my friends and most of all, I missed playing football. It is my favourite game,” says an extremely shy Mustafa. Asking his mother to translate his feelings, Mustafa says he felt enormous pain in his legs as well as other parts of his body.

On the school front, Abeer had to pass special instructions to his teachers while his friends helped gather class notes for him.

“While back in the UAE, we were at a loss. We went to several experts in Sharjah but no one was really qualified. We were then referred to Al Mafraq in Al Ain,” explains Abeer.

However, for a working couple, it was an exhausting journey every 10 days. “We were finally referred to the Dubai Bone and Joint Centre (DBAJ) in Jumeirah where Mustafa is currently being treated free of cost for the past two years. “We still have to pay up to Dh1,500 for two injections per week,” adds Abeer.

Says Dr Humeira Badshah, Rheumatologist at DBAJ, “It is a rare disease affecting up to one per cent of children in the world. The cause of the disease remains unknown but the immune system gets overactive and the white blood cells attack one’s own body.”

Referring to Mustafa’s case, Dr Badsha says it was likely he would outgrow the disease when he turned 18. “But in some cases the patients have to continue treatment lifelong,” she explains.

“When he came to us, he was limping and his knees were extremely swollen, but luckily, his parents had caught the disease in time,” she says.

“In another case at the centre, an 11-year-old has his hand frozen at 90 degrees angle only because there was a delay in the treatment,” she says.

In severe cases, children with this disease may never grow properly and may also need bone replacement surgeries.

On December 16, Mustafa, and four other people were given the “Heroes for Arthritis” Award by Princess Haya bint Hussein, wife of His Highness Shaikh Mohammed bin Rashid Al Maktoum, Vice-President and Prime Minster of the UAE and Ruler of Dubai, and Patron of the Emirates Arthritis Foundation (EAF) for their courage, selflessness and support in raising awareness on a number of arthritis-related diseases.

Mustafa now has to exercise regularly to keep his joints oiled. He also plays football and basketball and takes part in swimming.

asmaalizain@khaleejtimes.com