When Leela Alvares lost her sister, who was only 32 years old, to arthritis, she was moved to do whatever she could to help those who suffer from the disease. Undaunted by physical challenges, the Dubai woman climbed one of the world's highest peaks, Mount Kilimanjaro, to raise funds for the Emirates Arthritis Foundation. In six days time, she and other volunteers will run the Ras al Khaimah Half Marathon with a target of raising Dh115,000 (US$31,300). That's enough to treat three children with arthritis for a year and Leela knows at first hand the toll the disease can take on the young.
Her sister, Preeti Fernandes, was only 25 years old when she was diagnosed with arthritis, months after the first symptoms appeared. The disease aged Preeti. Just seven years after she developed the condition she died from complications, leaving behind an infant daughter. Until then Leela had associated the disease with older people. "I didn't realise it was a permanent condition. I couldn't imagine it would affect her life because she was so young. I was just exploring life myself," said Leela.
"When you need somebody's help to do something you should do easily, it changes your outlook. People wanted to help her but it became embarrassing. She didn't want to be the object of pity." When the condition worsened, Preeti began to walk with a limp. Embarrassed by the disease, she would tell people she had injured her foot. This stoicism often prevented those around her from knowing the true extent of her problem.
At times the arthritis would go into remission and she was able to live a relatively normal life, but it would be brought on again by cold weather or more active days. She would have trouble crossing her legs or raising her hands above her shoulders. She needed help climbing on to a train and even taking off her T-shirt. The worst part for her was that some days she needed help carrying her baby. "Preeti was a great mother to her daughter, but I'm sure she was frustrated. She was sad she couldn't be more active with her child."
Despite her limitations Preeti stayed as active as she could. She had a job, practised yoga and walked as much as possible. Her search for a cure for her pain led to many different physicians, but none was successful in managing her disease. "Every doctor she went to would give her a different treatment, would order a different therapy, so there was no consistency," Leela, 34, said. One winter morning Preeti slipped and fell. The inflammation in her foot became infected, but she just assumed that it was particularly bad arthritis pain. When she finally went to a doctor he rushed her to the emergency ward, but it was too late. The infection had spread, affecting her brain, and she slipped into a coma and died.
Leela, who at the time had just moved to Dubai from India, was shocked. "It never occurred to us that arthritis could be lethal - it was just an inflammation of the joints," she said. "I had just moved to Dubai and I knew she was having pain. Then I got a message that she was in the hospital. Then I got a message that she was in intensive care. The next morning I got a message that she was sinking."
After her sister's death Leela began to investigate arthritis and how it changes the lives of those affected by it. "I started reading up and seeing how it affects people's lives. So little is known about it and no one seems to talk about it. Arthritis is not a glamorous illness." She wanted to do something about it but did not know where to begin. She was busy with her new life in Dubai and supporting her family back in India.
In February last year she was planning to climb Mount Kilimanjaro in Tanzania when she met a doctor from the Emirates Arthritis Foundation. They began to discuss the high cost of treatment and a boy named Mustafa who was unable to walk. "I wanted to help the foundation, especially the boy suffering from arthritis. Suddenly my trip could be used to raise awareness and raise funds." An avid trekker, Leela was excited about climbing the mountain. She sent word to friends and family with the initial goal of raising Dh40,000. People passed on the message and she managed to raise Dh70,000 for Mustafa's arthritis treatment, enough for about two years.
The price of his medication is being covered by the Emirates Arthritis Foundation from the money that Leela raised from the climb. Twenty foundation members will be involved in the RAK Half Marathon on Friday and are accepting donations. "When I started I wondered how I could do it all, but the faith and trust the people had in me was heartening," said Leela. amcmeans@thenational.ae
