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176 – Rare Disease Symptoms – The Devil You Know
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Promising treatments for many rare diseases are on the horizon. As they start to become a reality, it’s important for us to adjust our expectations of what symptoms could potentially be relieved.
Listen as the dudes discuss their symptoms and show appreciation for friends and family who are deeply committed to traveling this rare disease journey.
Thank you for making me feel like I’m not alone. Your voices, your stories, your conversations, are things that I feel so grateful for. When I am struggling and feeling overwhelmed, one of my go-to mindfulness techniques is to listen to your podcast. You guys always remind me to take a pause, and breathe, and perhaps just “be”. Thank you for just “being” with me. Your voices, stories, thoughts and perspectives mean so much to me. I highly value you. You matter. You make a difference!
Hi Mary – thank you! We love you. -Sean
This was very uplifting Kyle and Sean. As a parent of a 13 year old FAer it can get pretty depressing out here. I think I’ll listen to this episode again with Cooper this evening.
Your making a difference.
Clover, thank you! We appreciate the affirmation and hope your child is well.