For Ysabella Amara, 16, living in the UAE's year-round sunshine means she must battle more than the usual challenges of adolescence. Diagnosed with a severe and painful form of juvenile arthritis triggered by sunlight, Ysabella has adapted to life indoors. But despite her difficulties, she has not given up on her dream of becoming a scientist.
Ms Amara's story is one of resilience, but it also highlights growing concerns around the high cost and slow approval process for treatment. Now, doctors are turning to artificial intelligence to cut through the red tape, speeding up insurance approvals and giving young patients like Ysabella a fighting chance.
Dealing with extreme pain
Her hands are crippled and rigid from the systemic lupus erythematosus (SLE) she has had since 2021, leaving her unable to do everyday tasks, such as writing or sending text messages.
Despite the effects of the light, such as terrible joint pain and swelling, Ms Amara is determined to continue her hard work while remaining in a country that experiences year-round sunshine. To do this, she is adapting by staying inside as much as possible or using an umbrella when an outdoor trip is absolutely necessary. It's a case of learning to listen to her body, and not letting her condition stop her from pursuing her dreams.
“At first we thought it was nothing serious, as I was sick and my immune system was bad,” Ms Amara, whose mother and grandmother from the Philippines have also been diagnosed with autoimmune conditions, told The National.
“Once it became a daily occurrence, I knew something was wrong. My [index] fingers were locked in place and I couldn't get them into the normal position without being in extreme pain.”
Chest pain while breathing, fatigue, fever and loss of hair and weight are other typical reported symptoms, as well as sensitivity to sunlight experienced by Ms Amara, who takes vitamin D pills to compensate for her lack of exposure to natural light.
“When I'm out in the sun, my symptoms are incredibly bad,” she said. “I have to stay indoors as much as possible, and barely go outside.
“I'm still learning how to listen to my body and understand I can't do a lot of the things my friends can, but I do use an umbrella if I have to go outside. Even if there's no cure, it doesn't mean there's no hope left. It won’t define me or stop me living as normal a life as I can.”
Vision loss
Another teenager in Dubai with a similar condition is Emma O’Brien. The 17 year old from Northern Ireland was first diagnosed aged three when living in Australia when her mum, Victoria, noticed she had a swollen left knee.
“Mum took me to the doctor when I was really young, and I was diagnosed with juvenile arthritis,” said Ms O’Brien. “I was advised to take naproxen, which led to uveitis, a really rare thing to have with juvenile arthritis.”
Uveitis is an associated condition where the immune system mistakenly attacks the body’s own tissues and organs, such as the eyes.
“People can see arthritis as a hindrance maybe, but it's brought new opportunities for me,” said Ms O’Brien, who would like to run her own business in the future.
“I went to an arthritis camp in the US to meet other people with the same condition. Most people connect arthritis with older people and their joints not working, but that is not always true.
“It hasn't really held me back, and I'm excited to learn how to drive. It’s good I've got medication to support my eyes.”
Keeping costs down
Treatment costs are a significant challenge. Monthly injections to bring symptoms under control can cost from Dh3,000 to Dh5,000, and they are not always covered by health insurance.
Delays to approvals are not uncommon as insurers evaluate often complicated symptoms and related conditions in need of continuing treatment.
“There are 50 types of arthritis and they can affect any age group,” Dr Humeira Badsha, founding member of the Middle East Arthritis Foundation, said.
“The most common is osteoarthritis, which affects older individuals. The more we age, the more common osteoarthritis becomes. About 20 per cent of people will get osteoarthritis at some point in our lives.
“In teenagers, there are different types of arthritis, like juvenile arthritis, rheumatoid arthritis and lupus - these are all autoimmune diseases.”
The most common rates of osteoarthritis are in North America, where 9.7 people per 100,000 have the condition diagnosed, almost twice the number of 5.34 per 100,000 in the MENA region.
Although specific UAE statistics are not available, MEAF estimated those affected with teenage arthritis to be two to five out of 100,000, with less than one per cent of the population having lupus.
AI support
Dr Badsha and her colleagues are working on a new artificial intelligence tool to speed up insurance approvals, and improve access to specialists.
“Anyone who has health insurance in the UAE will know when the doctor submits expensive drugs like this, it can take a long time for them to evaluate,” said Dr Badsha.
“On average, our study showed insurance companies come back with three queries for pre-authorisation for arthritis, so we have developed a system to accelerate the process.”
Via the AI system, doctors upload a report to suggest if a drug is likely to work, if other medications have already been used and how successful they have been. It also searches the most cost- effective medical solution in minutes, rather than the days it would typically take a specialist to analyse each case.
“The artificial intelligence can eliminate waste, fraud and give patients the treatment they need quickly,” said Dr Badsha. “This controls costs and eliminates treatment delays."
What is systemic lupus erythematosus?
The exact cause of lupus is unknown but scientists do know genes play a major role, as do environmental factors, hormones and some medicines, with women 10 times more vulnerable than men.
Lupus is most likely in young women aged 15-44, while African Americans, Asian Americans, African Caribbeans, and Hispanic Americans are most likely to have the condition.
Diagnosis can be a challenge, with the American and European Rheumatology societies suggesting identifying specific symptoms, physical exams and laboratory tests the most effective.
A rash and swelling in the ankles can determine SLE, while a medical exam may pick up a heart friction rub - an abnormal sound in the chest. A positive test for anti-nuclear antibody (ANA) taken from a blood sample can confirm diagnosis.
The Middle East Arthritis Foundation (MEAF) is marking World Arthritis Day on October 12, with community events across the region to encourage early detection, prevention and better management of the disease, and other related conditions.
According to the MEAF, arthritis affects more than 350 million people worldwide and about one in five in the UAE.
