The Social Isolation of Caring For Someone with a Rare Disorder

I Care for Rare

I Care for Rare reveals the challenges faced by the families caring for people who have a rare health condition. In this episode of the I Care for Rare podcast host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Carl Weatherall to the show. As father to Alyssa, a young woman who experiences hundreds of epileptic seizures each day, Carl’s spent more than 20 years advocating for the healthcare, education and social support his daughter

I Care for Rare is more than just a podcast; it's a social advocacy campaign that seeks to drive reform in healthcare and community support systems for rare diseases. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice.

In this show, Carl discusses the challenges of parenting a child with complex needs into adulthood and the resulting social isolation his family has endured.

“You get socially isolated because you spend so much time and are ever focused on your child that you just haven't got time for other people,” explains Carl. “You don't want to socialize because you're exhausted and you haven't slept in days.”

Sandra also shares her own experiences as mother to Zach, who was also born with a rare disease that remained undiagnosed for 18 years.

This podcast highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include:

• improving early detection,
• ensuring timely care,
• enhancing community support,
• providing access to promising therapies,
• and promoting innovative research.

"I Care for Rare" calls on both the Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.

We Need Your Help

Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.

Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017.

Here’s how you can help:

• Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy.
• Download our letters and send them to your government officials.

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