Clinic provides personalized care for patients with inherited genetic disorders impacting the heart

Friedreich's ataxia (FA) is a rare, inherited disease that damages the nervous system and can lead to balance and coordination problems (ataxia). Symptoms often start in childhood and get worse over time, potentially causing difficulties with walking, speech, and swallowing. 

FA, caused by a genetic defect passed down from both parents, can also lead to other health issues like heart problems, diabetes, and scoliosis. It's 

FA results in a cardiomyopathy (disease of the heart muscle) characterized by thickening, stiffening, and ultimately failure of the heart. The most common cause of death for individuals with Friedreich's ataxia heart failure or sudden cardiac death.

Individuals with Friedreich's ataxia living in Southern Alberta have a wonderful resource. The Broderick Cardiac Neuromuscular Clinic, located at Peter Lougheed Centre, provides medical are for patients and their families living with FA and other inherited disorders that affect the heart muscle.

Led by Dr. Omid Kiamanesh, MD, the clinic is made up of a multidisciplinary team of dedicated nurse clinicians, physicians, administrative support staff. They collaborate with a working group of neurologists, physiatrists, respirologists, and allied health care professionals devoted to caring for persons with neuromuscular disorders. 

“Our clinic is the only one of its kind in Southern Alberta,” says Kiamanesh. “Our patients often have complex needs, so it’s important that we provide a team to give them nuanced and personalized care. Multidisciplinary care for neuromuscular disorders is associated with improved clinical outcomes and quality of life.” 

One of those patients is Kadence Foley, a remarkable young woman who lives with FA.

Foley was diagnosed with FA in 2015, along with her sister Addison, who sadly passed away in 2020 due to heart complications associated with her condition. 

Now 21, Foley’s journey has brought her to the Broderick Cardiac Neuromuscular Clinic under Kiamanesh’s care. 

Shanna Leavitt, Foley’s mom, says the clinic provides a warm, supportive community that has eased her and her daughter’s fears.   

“We did lose Addison to the problems with her heart, and we don’t know how Kadence’s heart will react, so it’s important to have that support,” says Leavitt. “We find the team very responsive, which helps so much.” 

Leavitt has noticed a great deal of collaboration goes on behind the scenes between the clinic and her daughter’s other specialists, who are located in different clinics around the city.  

“We know they are consulting about Kadence, and I appreciate that so much,” she says. 

Foley’s health needs are complex. Not only does she have FA, which causes palpitations and some chest pain, but she also requires a wheelchair and suffers from diabetes and epilepsy. 

Fortunately, the young woman enjoys visiting the clinic. 

“It was challenging at first to graduate to adult care, but I met Dr. O (Kiamanesh) shortly after, and I am very comfortable with him,” says Foley. “The clinic has created a friendly community and it’s nice to go there.” 

Despite her mobility and other issues, she remains active – heading to the gym twice a week, working at the Airdrie Boys and Girls Club and studying social media and digital marketing through online classes at Mount Royal University.

Foley is also a good friend and seeks out ways to help others. 

For example, she has become an unofficial ambassador at the clinic, reaching out and offering support to other young women with FA. 

Leavitt is proud that her daughter puts herself out there for others.  

“FA can be lonely, but Kadence and I talk a lot about our great community,” she says. “Kadence has said she wants to be able to be there for others, and it’s good for her.” 

Kiamanesh says Kadence and Shanna’s resilience and clarity about what is important in life inspire him. 

“They are authentic, open, and thoughtful people, and I feel so fortunate to be able to participate in their lives,” he says. “As a physician, I am humbled and honoured that they allow me to share in their joys and victories and grieve with them over their loss.”

Dr. Omid Kiamanesh is a Clinical Assistant Professor in the Department of Cardiac Sciences at the Cumming School of Medicine and a member of the Libin Cardiovascular Institute. He heads the Broderick Cardiac Neuromuscular Clinic and the Broderick Genetic Cardiomyopathy Clinic.