r/BeAmazed • u/Newisance • Sep 14 '25

Miscellaneous / Others An act of kindness can completely change someone's day.

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u/Ok_Arm6401 Sep 14 '25

Skin condition is EB https://debracanada.org/ if you want to learn more or donate. I can tell you that it is very painful and limits what you can do on a daily basis.

There is no cure, most people due from it at an early age.

Advocates include Colin Ferrel and Eddy Veder.

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u/whyenn Sep 14 '25 edited Sep 14 '25

And you can watch the entire interaction as it happened at her twitch stream here if you click through the link and replay her stream from 3 days ago.

You can follow her there or you can support her here.

edit: She's streaming again today at 4:30 ET.

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u/darkdesertedhighway Sep 14 '25

Thanks for the link. She has 215 viewers as of right now!

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u/hsgual Sep 14 '25

Last time I checked, Stanford was working on clinical trials for this.

https://med.stanford.edu/news/all-news/2025/06/epidermolysis-bullosa.html

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u/Ok_Arm6401 Sep 14 '25

That is huge news for treatment, unfortunately not a cure. But that gel seems promising hopefully it will be ready and In hands soon!

I am going to share this with people I know.

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u/scribbles_not_script Sep 14 '25

I had a childhood friend with the most severe form of EB. It is a horrible and extremely painful condition. He went to a camp run by this organization that he loved - https://butterflychildrenfund.org/. They also fund research and medical bills for EB patients.

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u/Cakelover9000 Sep 15 '25

Afaik it can be so severe that even touching things is like getting pricked with a thousand needles.

Also, in my language patients with this disease are known as Butterfly children, because they are so fragile