Kaye team brings relief from rare disorder

Nation’s first fully certified Angioedema Center of Excellence offers highest level of care

Story by Marni Kuhlmann | Photo & video by Evan Isbister

EDMONTON — Finding world-class treatment for a rare condition can be a challenge for patients. For many, getting a diagnosis is difficult and treatment options can be limited. The Angioedema Clinic team is working hard to change this at the University of Alberta Hospital’s Kaye Edmonton Clinic.

The Angioedema Clinic — part of the Dr. John Akabutu Centre for Bleeding and Rare Blood Disorders — has become the first fully certified Angioedema Center of Reference and Excellence (ACARE) program in Canada. The program is a joint initiative of the Global Allergy and Asthma European Network (GA²LEN) and the Hereditary Angioedema International (HAEi) that certifies global centres of excellence in angioedema management.

Angioedema is a debilitating condition associated with recurrent swelling that‘s often challenging to diagnose and manage. Swelling typically occurs in the hands, feet, face, and airway — which can be life-threatening. Patients may also experience severe abdominal pain, nausea and vomiting caused by swelling in the intestinal wall.

“Angioedema affects many facets of a person’s life. Many patients end up in the emergency department, they might need treatment before surgery, there are barriers to dental care, and so on,” says Dr. Adil Adatia, director of the ACARE program.

“As you can imagine , patients who have a life-threatening condition might have psychological and social concerns. We knew we needed to offer a program that can address all of those things, rather than just the medical care.”

As part of the ACARE program, patients receive comprehensive care from a multidisciplinary team of physicians, nurses, social workers and dentists, with a focus on both medical management and psychosocial health.

The program is also active in research, taking part in large, multicentre clinical trials, and working toward genetic discoveries using next-generation sequencing — all in an effort to ensure patients benefit from the latest advances.

“The ACARE program means having a connection to legitimate resources, qualified care and support. You’re not only accessing the physician but other team members who help,” says patient Kerystn Lane, who’s part of the centre’s clinical trial that changed her life.

“I experienced 400 days attack-free, when before I was having an attack twice a week. To go to from every two to three days to a year-and-a-half without an attack — it was fantastic.”

Since the ACARE program is well-recognized around the world, certification also brings opportunities to recruit international experts for patient and healthcare-provider education as well as to raise awareness.

“Awareness is essential,” adds Lane. “For a rare disease like angioedema, people suffer with symptoms their whole life and continue to die from the disease. When they hear about centres like this, or come across research, they can get a diagnosis and get back to their day-to-day life sooner.

“I’m so grateful for the team.”

For more information about the ACARE program, visit Dr. John Akabutu Centre for Bleeding and Rare Blood Disorders.