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Dealing with a Chronic disease can be a lonely situation, especially for young people who may feel misunderstood. That's why Denise Archilla started Chronic Warrior Coaching and the Chronic Warrior Collective - to have a place for kids to be seen and heard. Listen to hear about some of the struggles of a Chronic Warrior and how Denise is addressing those needs.
Links for this episode:
Chronic Warrior Collective
Nebraska Ataxia
In episodes 155 and 157, we talked about the symptoms of Friedreich's ataxia (FA) and how they affect us, especially the mental and emotional aspect of dealing with the challenges. We both experienced some relief in the following ew weeks - merely because we got that stuff off our chest. Why is that? Listen as we discuss.
Patrick James Lynch is CEO of Bloodstream Media and creator of award winning documentaries, TV Shows, podcasts, and other media that entertains and educates about rare disease. He is a big presence in the Hemophilia community but has a certain resistance to becoming "Mr. Hemophilia". We really enjoyed the conversation and we hope you do too!
Some of Patrick's work:
Blood Stream Media
Stop the Bleeding Web Series
Bombardier Blood documentary
My Beautiful Stutter documentary
Today we feature episode 87 - Superheroes from our friend Effie Parks at the Once Upon a Gene Podcast. This episode features a few different people and stories about the superheroes in their lives.
Check out our interview with Effie in an earlier episode: Episode 129.
It is understood that mental health is of huge importance in life, and it can be amplified in the rare disease community. And then add society's pull on the situation - Men are seemingly expected to be stoic and strong no matter what. You've got a recipe for a particularly difficult situation. That's what David Ross is addressing with his men's group focused on Men's Mental Health in Rare disease. Listen to find out more.
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