Pam Husband has spent 23 tireless years giving a voice to patients and families affected by inherited cardiac rhythm disorders, which often lead to sudden cardiac death.
She is the Executive Director of the Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, Canada’s only SADS-specific patient advocacy group.
The registered Canadian charity works with patients and medical professionals to raise awareness about the warning signs of SADS.
An estimated 700 children and young people die from a SADS condition each year in Canada – early diagnosis and proper treatment help patients lead productive lives.
“CANet has been very helpful by including and inviting us to their meetings and conferences,” Husband says.
As a patient-information group, SADS gets to talk to other physicians about SADS, and create opportunities to reach out to their patients.
For years, the organization has brought patients and healthcare professionals closer together through their website, social media, and importantly, their SADS conferences, held across Canada, “It is critical to bring patient voices forward, understand their experiences, and improve their healthcare experience,” Husband says.
In her eyes, patients are not only recipients of healthcare, but also its participants.
Earlier, Husband explains, the physician was the expert, and the patient is merely the receiver.
SADS conferences give patients an opportunity to approach and interact with doctors more proactively.
Physicians, according to Husband, learn to see patients in a different light; they get to discuss patient issues in more personal, informal way, far removed from formal clinical settings.
“The conferences are beneficial for encouraging patients to be more engaged with the healthcare community, and actively invest in healthier lifestyles,” Husband says.
For example, current recommendations of acceptable levels of exercise for patients suffering from inherited cardiac rhythm disorders have come about from a combination of research studies, but also, feedback that physicians have received from patients in these conferences.
Many patients, Husband informs, have become role models to others like themselves, inspiring them to take charge and ownership of their health conditions.
Most importantly, however, the conferences provide patients with a sense of belonging.
“Every patient has gone through a similar experience,” Husband says. “People here are very good at taking each other under their wings.”
A few years ago, Husband lost her 16-year old son to sudden cardiac death – he was initially misdiagnosed with idiopathic epilepsy.
“These inherited diseases are not just affecting one individual but whole families – so the correct diagnosis is very important,” she says.
Shortly after his death, Husband’s daughter was diagnosed with an inherited cardiac rhythm disorder.
“I have strong motivation to prevent these tragedies in other families,” she says.
She looks forward to making progress on that front with CANet, to achieve a 10 per cent drop in sudden cardiac death within the decade.
“We are very excited about our relationship with CANet – there are opportunities on both sides, and we are really thrilled to be included in the organization,” Husband says.