Saturday 18 September 2021

Dania Malki

Rare disease finds cure at Cleveland Clinic

ABU DHABI, August 2, 2021

After 30 years of struggling with a rare autoimmune disease, Dania Malki has finally found relief thanks to Cleveland Clinic Abu Dhabi, an integral part of Mubadala Health.  
It was 30 years ago that Malki, a Syrian American communications professional and aspiring artist, was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA), a rare disease that only affects around five in every million people. 
Over the years, the severity of Malki symptoms had fluctuated as doctors tried a wide variety of medications to control her condition. Despite long periods where she enjoyed minimal symptoms, as her condition progressed, Malki’s world became smaller. 
Eventually, even walking more than a few steps became a challenge as she struggled for breath. Desperate to find some relief and take her life back, Malki visited Cleveland Clinic Abu Dhabi where she began an innovative new treatment that has allowed her to start exercising, going out to see friends and looking to the future once more.  
“When Malki came to Cleveland Clinic Abu Dhabi, she had been struggling for a very long time. She was highly symptomatic, she struggled with her breathing and had many limitations in her daily life due to her shortness of breath and coughing. She had received a lot of care over the years but was never able to achieve proper control of her symptoms. When I look back on her the first time we saw her and compare it to now, the change in her life is really stunning,” says Dr Fulvio Salvo, an immunologist at Cleveland Clinic Abu Dhabi.
With no known cause or available cure, EGPA affects the immune system and causes inflammation in the blood vessels around the body. While it can affect many organs including the heart, kidneys and nerves, it most commonly affects the lungs and upper airways. The condition is strongly associated with a history of allergies and asthma occurring almost exclusively in patients with severe asthma. The most common symptoms of EGPA are shortness of breath due to poorly controlled asthma, fatigue, nasal obstruction, muscle and joint pain.
“There were years where I just couldn’t do anything. I used to work full time even though I would feel very weak by the end of the day but 8 years ago I had to give up work because I had become too weak to continue. I couldn’t even walk down a flight of stairs without losing my breath. I would have to lie down to rest every two hours. My social life suffered because I would feel too weak to see people. I love to paint and there were times when the smell of the paint would affect me so much I couldn’t even do that anymore,” continues Malki. 
Since being diagnosed, Malki had seen a great many doctors looking for relief from her symptoms. She had tried numerous courses of treatment including asthma inhalers and even immunosuppressants usually used in transplant patients. However, one medication had been a constant in her life – cortisone.  
“After being diagnosed with EGPA I was going around from doctor to doctor. Some would know about EGPA, but most of them would just try to treat my asthma. I wasn’t really treated -- I was just on long term cortisone. Every so often, doctors would try to stop the cortisone, telling me it’s not good to be on it for so long and my symptoms would come straight back. At the beginning cortisone is like a magic pill, because it really minimises symptoms but eventually it becomes almost toxic,” says Malki.
In 2019, Malki decided to visit Cleveland Clinic Abu Dhabi as her symptoms had worsened again. She began losing weight rapidly, experiencing extreme allergies and struggled to take more than a few of steps without stopping to catch her breath.
“When we first saw Malki, her symptoms were ruling her life despite the fact that she was on the maximal dose of asthma control medications, immune suppressants and cortisone, the long-term effect of which can be very serious. I was really concerned with the fact that she had been using cortisone for more than 20 years. We decided to try a new treatment, a biologic medication that’s available here and has been shown to be effective in treating EGPA and I’m pleased to say we have seen a real transformation in Malki’s condition,” continues Dr Salvo.
After beginning her new treatment, injections administered once a month, Malki’s care team began to slowly reduce her dose of other medications. As her condition improved, she was able to stop taking immunosuppressants, some of her asthma medications and now only receives a minimal dose of cortisone. Her condition has improved so much that she is exercising, planning to travel and hoping to display her art - paintings of street scenes and landscapes of Syria, her ancestral home.
“The moment I got to Cleveland Clinic Abu Dhabi, I knew this time would be different. My doctors knew all about EGPA and told me managing that was key to helping me. I wish I had found much sooner the kind of care my team gives me now. It was definitely a waste of time in not finding the right doctors who could take my case and really get to the root cause of my problems earlier. But I can’t regret that time as I know medicine evolves quickly and it has given me a fresh perspective that I hope to bring to my art,” concludes Malki.-- TradeArabia News Service


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