6 Comments

Thank you for shining a light on rare disease day. I was born with Idiopathic Hypertrophic Subaortic Stenosis, later renamed Hypertrophic Cardiomyopathy. It had no cure or treatment at the time, and I ended up with a heart transplant. I wrote a little bit about it this past Wednesday.

https://dawnlevitt.substack.com/p/today-is-hypertrophic-cardiomyopathy-058

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Thanks Dawn! I’ll check out your substack. I had a lot of heart conditions as part of aHUS- I hope you’re feeling stable. I know first hand how scary a heart condition is!

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Thank you for spending some of your precious energy and time to publish this, Taylor. I'm learning and will keep reading—best wishes to you and your lovely family, living Rare.

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Thanks for holding space and being such an enormous champion. Hope you’re doing well!

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I'm on me-time, so right now, I'm doing very well, thx! xoxo You're very welcome, Taylor. Together, we can lift awareness AND build mutual support. Walking my empathy and inspiration path.xoxo

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Perfectly put! Thanks!

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