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Living with arthritis

Arthritis is a disease for life. No studies have discovered how you get it yet but once you do, it's becomes your burden. But life does not have to be a tale of misery, many have gotten arthritis and lived full and healthy lives – with the right treatment. Ria Mendoza investigates.

With so many diseases vying for our attention, it would not be a surprise anymore to see that one day, our calendars will be filled with a disease to campaign for each day. Some people find it strange that a little thing as arthritis needs to be focused on when there are more serious diseases like AIDS, Osteoporosis, Breast Cancer, Cervical Cancer and more. The truth is, arthritis is as serious as all these diseases. It is the number one debilitating disease that can lead to a total disability five to ten years from its onset. And the bad news is, it does not only affect the old as was popularly believed, arthritis affects the young, old, middle age and even infants are susceptible to the disease.

Take Sonia Mohd for instance. She lived a pretty active life until she got arthritis. She would be up early in the morning for prayers, then she would go straight to work in the hospital from 6 o'clock in the morning until 3 o'clock in the afternoon. By 4:30, she would be at the university to pick up her sisters. She swam regularly and was generally an active lady who's on the move all day. This drastically changed when she contracted arthritis at the young age of 24.

“Those first few years, I felt so tired. Arthritis made me very tired, I did not want to get up, I did not want to get dressed, I did not even want to wash my face. Everything was so painful to do, even moving my fingers were painful. I started feeling pains in the joints, foot, hips and I couldn't walk properly. Some days I just couldn't get up in the morning! When it was very bad, my husband had to dress me in the mornings because I couldn't do it myself. Arthritis also affected my prayers – I prayed for years sitting down because I couldn't even move, let alone bend.”

“Because I couldn't do much, I just sat there enduring the pain. I did not want to move even an inch because every movement brought more pain,” she shares. What made her symptoms worse was when she became pregnant and to her horror couldn't take any medication to relief her pain. “The only thing the doctor said to me is, ‘All the medications for this disease cannot be taken by a pregnant woman.' Although this was a difficult reality she remained positive. “I said, fine, I don't want to harm my baby in any way. So I suffered and during my pregnancy it was even more very painful. I couldn't even take panadol because some people advised that it could harm the baby.”

“What was even more painful was the fact that I couldn't even carry my own baby. I had to hire a maid during my pregnancy because I knew that when I delivered I would not be able to care for my baby by myself. When my daughter was born, my family shared care duties. Either my husband, mother or the maid would care for her. My mother is 60 years old and she was able to carry her and I couldn't! I cried hundreds and thousands of tears. You cannot imagine it how difficult that period was for me.”

A new lease on life
Sonia did not even have the vaguest idea that she can contract arthritis. She always thought that it was an old person's disease although she readily admits that she never saw her grandmother, who lived up to the ripe age of 115, suffer from it. Dr Cathy Leibman, Director of Operations of the Emirates Arthritis Foundation (EAF), explains that people might have a predisposition to arthritis but there's really no telling how and when one can get it.

A solid understanding of the disease is what is lacking in the region. According to one of the studies conducted by EAF, 20 percent of the population world wide is afflicted with arthritis. It has also been found that arthritis is the leading cause of disability. In the region 45 percent of patients have shown some form of disability. In the UAE, there is a delay of diagnosis of about 13 months and delay of treatment of 18 months. Also, they found that 57 percent of patients do not receive right treatment.

“A lot of patients are being treated for the pain and the swelling but not being treated aggressively to slow down the disease,” stresses Dr Leibman. Though Sonia was correctly diagnosed with arthritis the first time she went to a doctor, she did not get any explanations on how the disease can affect her life and she also did not receive the proper medications because of her pregnancy.

“My grandmother passed away without rheumatism so I kept asking myself why and how I got it,” she says. “I thought it was just a joint problem that will be gone with little antibiotics but as time passed, it got worse and worse. For five years I lived without an understanding of what I had. Last year, I finally decided to change my doctor and she explained everything to me unlike the doctor before who diagnosed my ailment as arthritis but did not take the time to explain the disease to me. Imagine, one of my doctors even told me that I could have got it from kissing children in the nursery!”

Dr Leibman's answer for this is a solid information campaign. The EAF aims to educate both the members of both the public and health sector. With the Walk for Arthritis which they held at the Dubai Festival City (DFC) last month, they intended to raise awareness about the disease. They also look forward to working more with the Ministry of Health to be able to strengthen the region's capability in handling the disease.

Sonia went to the EAF about a year back. She heard from friends that they help people who cannot pay their medications and gives short courses on how to cope with different situations. The Foundation explains the full picture to the patients: what arthritis is, its effects and what they can do. Aside from short courses, like the Aqua Exercise Programs sponsored by Johnson & Johnson which encourages healthy exercise while in the water, they also have a support group for the patients. Through these, the patients become empowered with knowledge and they regain their lives back.

“The EAF is wonderful, they give us educational courses on how to cope with arthritis. For instance, they teach us that instead of carrying an item, especially a heavy one, we should push it or use a trolley. They also encourage us to excercise. In fact, the first course I took with them was the Aqua Excercise program,” Sonia adds.

“With their help, I have now accepted that this disease is for life,” Sonia shares. “When I met Cathy [Dr Leibman] she thought I had the whole picture, that if I did not take the proper medications, I will be disabled within 10 years' time. But at the time she explained it to me, that was the very first time I heard the whole truth! I went home shaking and thoroughly shocked.”

This is a major reason why EAF wants to work with the Ministry of Health too and now only with the public for the disease's information dissemination. The proper channels should be properly educated on the disease so that they can explain it carefully to their patients. And even though no set cause of the disease has been found, Dr Leiban insists that a healthy lifestyle will decrease your chances of getting arthritis.

There are cases that go into remission but in general, arthritis is a disease for life. With over a hundred different kinds of arthritis, such as the common rheumatoid and then Osteo arthritis which contributes to the wear and tear of joints and which older people over 60 get. Maybe you're a skier or a golfer and you use your joints a lot. That's the kind of arthritis that you will get. There's also gout – you get that with your diet, you drink too much alcohol and their diet is not good. Psoriasis is another kind and it can come with psoriasis you have psoriatic arthritis.

Arthritis signs and symptoms
The disease is characterised with pain around the joints and inflammation around the joints which are aggravated by sitting down, opening jars, turning keys and the lost of movement in their joints. Swelling over the joints. Sometimes fever and unexplained weight loss also occurs.

The Foundation was launched in April 2006 by Dubai Bone and Joint Center under the patronage of HH Princess Haya bin al Hussain. “We've been running about a year and a half and it's just growing,” adds Dr Leibman. “We have an endowment fund and to qualify, patients must fill out application forms and go through a new scoring system. When you are accepted, we will help you anywhere from 50 to 90 percent of the medical bills. If we feel that you need more than that, we can give you 100 percent financial support. But normally, when patients visit doctors, they are just asked to pay a small amount, something like AED 50 for doctors who are accredited with the Foundation.”

“The Foundation totally relies on donations from corporations and individual sponsors. This is the reason why we held the recent Arthritis Walkathon at Dubai Festival City. We're doing it to spread awareness that we are here to help people, that we are part of the Dubai Bone and Joint's corporate responsibility. Other big groups are also involved, such as the Rivoli Group who just came onboard and DFC who will be supporting us for the next three years with our walkathon. I think we've been doing a pretty good job but we need to promote more awareness to let people know that we are there, to get more involved with the Ministry of Health and we need more people knowing what's going on.”

Arthritis Fast Facts
• Arthritis affects about 20 percent of the population
• Arthritis is the leading cause of disability
• Arthritis affects all ages from babies to senior citizens
• The economic burden of arthritis is one percent of the GDG of most countries
• If a young person with Rheumatoid Arthritis is left untreated, they will be disabled in 10 years.

IN THE UAE, patients receive:
• Delay in diagnosis by 13 months
• Delay treatment up to 18 months
• 57 percent of patients are not taking the right treatment
• 45 percent had deformities and disabilities
• The average age of patients is only 43 years
• There is a lack of awareness of the disease
Prevention can be achieved through weight loss, exercise, healthy diet and increased activity. Early diagnosis can be done through information dissemination, education and regular screening.

Source: Arabian Woman
Posted: 26/06/2008

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