30 YEAR SEARCH FOR RELIEF LEADS RARE DISEASE PATIENT TO CLEVELAND CLINIC ABU DHABI

61

Doctors Offer New Approach To Treat Disease That Affects 5 In A Million

Dania Malki

Abu Dhabi, United Arab Emirates: 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 Dania, 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 Dania’s 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, Dania’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, Dania 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 Dania 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 Dania. 

Since being diagnosed, Dania 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 minimizes symptoms but eventually it becomes almost toxic,” says Dania.

In 2019, Dania 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 Dania, 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 Dania’s condition,” continues Dr. Salvo.

After beginning her new treatment, injections administered once a month, Dania’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 Dania.  

About Cleveland Clinic Abu Dhabi:

Cleveland Clinic Abu Dhabi, an integral part of Mubadala Health, is a multispecialty hospital on Al Maryah Island in Abu Dhabi, UAE. Cleveland Clinic Abu Dhabi is a unique and unparalleled extension of US-based Cleveland Clinic’s model of care, specifically designed to address a range of complex and critical care requirements unique to the Abu Dhabi population.

Cleveland Clinic Abu Dhabi has the following Institutes: Heart & Vascular, Neurological, Digestive Disease, Eye, Respiratory, Critical Care, Surgical Subspecialties, Medical Subspecialties, Emergency Medicine, Anesthesiology, Pathology & Laboratory Medicine, Imaging, Quality & Patient Safety, and Clinical & Nursing. In all, more than 40 medical and surgical specialties are represented at Cleveland Clinic Abu Dhabi.

The facilities at Cleveland Clinic Abu Dhabi combine state-of-the-art amenities and world-class service standards. The hospital is a 394 (expandable to 490) bed facility, with five clinical floors, three diagnostic and treatment levels, and 13 floors of critical and acute inpatient units. It is a physician-led medical facility served by North American/European Board Certified (or equivalent) physicians. Cleveland Clinic Abu Dhabi provides patients in the region direct access to the world’s best healthcare providers and Cleveland Clinic’s unique model of care, reducing their need to travel abroad for treatment.

Cleveland Clinic Abu Dhabi – Al Ain began offering select medical services in December 2017. The facility is located on the Tawam Hospital Campus in Al Ain.

About Mubadala Health:

Mubadala Health is the integrated healthcare network of Mubadala Investment Company. Established in 2021, Mubadala Health operates, manages, and develops a portfolio of healthcare assets including: Cleveland Clinic Abu Dhabi, Healthpoint, Imperial College London Diabetes Centre (ICLDC), Amana Healthcare, National Reference Laboratory (NRL), Capital Health Screening Centre (CHSC), Abu Dhabi Telemedicine Centre (ADTC), Danat Al Emarat, HealthPlus Diabetes & Endocrinology Center, HealthPlus Family Clinics, HealthPlus Fertility, HealthPlus Women’s Health Center, Moorfields Eye Hospital Abu Dhabi, and a stake in Al Meswak Dental Clinics Group. With a vision to transform the regional healthcare landscape, Mubadala Health sets a new benchmark for the UAE and regional healthcare industry through its state-of-the-art facilities and world-class caregivers who strive to put patients first across its continuum of care. Innovation, research, and education are the foundational pillars of Mubadala Health, supporting the further development of a sustainable healthcare sector in line with the vision of Abu Dhabi and the region.