Skip Beloff champions care for little-known heart condition

Charles “Skip” Beloff was just returning from an Italian vacation with his wife when he began to experience some strange symptoms. He went from enjoying the hot weather and great food of Italy to lightheadedness and shortness of breath. Athletic his entire life, Beloff had never experienced any serious health issues. Then, his ankles began to swell. Worried what the symptoms might mean, he made an appointment to see a doctor right away.

“It would have been easy for me to write off the symptoms as ‘no big deal,’” says Beloff. “I am forever grateful that I chose to take agency over my health in that moment, because what I was about to discover was something I could have never imagined.”

After five months of uncomfortable testing, misdiagnoses, scary prognoses and international visits to specialists – which Beloff refers to as a “wild goose chase”- he was diagnosed with cardiac amyloidosis.

“My world was turned upside down,” says Beloff. “I was terrified.”

Cardiac amyloidosis is a build-up of abnormal protein around the heart. Over time, these amyloid proteins replace normal tissue, impacting the heart’s ability to pump blood and transmit electrical signals, eventually resulting in heart failure. Colloquially, it is called Stiff Heart Syndrome because the heart tissue thickens and becomes less flexible.

Dr. Michael Chetrit is leading the new Cardiac Amyloidosis Research Program at the McGill University Health Centre (MUHC).

Once considered a rare condition, physicians are now finding that cardiac amyloidosis is much more common than previously thought. The symptoms are insidious: the swollen ankles, shortness of breath and carpal tunnel syndrome can all be easily ignored or attributed to other, more benign, conditions.

After months of desperately searching for answers, Beloff was elated to finally have a diagnosis, but he was dismayed to learn that no single institution in Canada specialized in treating the disease. He describes a feeling of “chaos lifting” when MUHC hematologist Dr. Michael Sebag and Jewish General Hospital (JGH) cardiologist Dr. Caroline Michel teamed up to provide the unique and specialized care Beloff requires.

“I am happy to report that together we have found a treatment plan that has slowed the progression of my disease and allowed me to continue living my life,” says Beloff.

To help the increasing number of individuals diagnosed with cardiac amyloidosis, the McGill University Health Centre (MUHC) is launching the Cardiac Amyloidosis Research Program. The MUHC recruited Dr. Michael Chetrit, an internationally renowned expert from the Cleveland Clinic, to lead the program. A graduate of McGill’s medical residency program, Dr. Chetrit is returning to Montreal to work closely with the MUHC’s renowned cardiology team to improve outcomes for individuals with the disease.

Dr. Chetrit and his colleagues will develop advanced screening techniques for patient records to identify those who should be screened for cardiac amyloidosis, improve fast-track diagnosis using the MUHC’s state-of-the-art cardiac imaging facilities, and deliver the best treatments to halt the progression of this deadly disease. This new initiative has the potential not only to improve, but to save lives.

“Patients with cardiac amyloidosis are an underserved population. The new Cardiac Amyloidosis Research Program will allow us to identify individuals with the disease and provide meaningful therapy that could potentially save lives,” says Dr. Chetrit.

All of this is fantastic news for Skip Beloff, who is driven to help others struggling with undiagnosed cardiac amyloidosis.

“I promised myself that, once I made it through treatment, I would do everything in my power to ensure that no cardiac amyloidosis patient would go misdiagnosed,” Beloff says.

To make good on his promise, Beloff joined the MUHC Foundation’s Dream Big Campaign Cabinet to assist the foundation in raising $200 million to change the course of lives and medicine. Among the Dream Big Campaign’s priorities is Fix Broken Hearts, which will raise $50 million to ensure Montreal has the lowest rate of hospitalization and fewest deaths due to heart disease in Canada. The new Cardiac Amyloidosis Research Program is a key priority of this transformative campaign.

“There are so many exciting new developments and treatment options on the horizon, and I am honoured to be part of the Dream Big Campaign Cabinet and help raise funds and awareness for the growing cardiac amyloidosis community,” says Beloff.

To start, Beloff is lending his voice to the fundraising effort to get the new Cardiac Amyloidosis Research Program up and running. The MUHC Foundation is seeking support from the greater Montreal community to enable Dr. Chetrit and his team to build the infrastructure needed to begin research and treatment.

With an expert health care team on his side and renewed hope for a long and happy life, Skip Beloff can’t wait for his next scoop of gelato under the Italian sun.

To learn more about the MUHC Foundation’s Fix Broken Hearts priority and how you can support the MUHC Cardiac Amyloidosis Research Program, visit www.muhcfoundation.com/dreambig/cardio