You are not alone

Staying Woke



I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandchildren range in age from a college student, high school, elementary to toddler. Conversations can be eye-opening. You learn a lot: who’s salty, why something’s lit, and being woke. If you follow social media, you see it everywhere.

This word stays with me. Woke. People are willing to be engaged.


SS Supergirl

It’s Up To Us


There’s a significant message in “being woke” for the Superficial Siderosis family. We are obligated to spread awareness. Whether for ourselves or an advocate for a family member or friend. Those who suffer from this ultra rare condition need all the support we can give.

The Silent Bleed squad has been busy providing information, producing informational flyers, selling awareness wristbands and hosting fundraisers over in the U.K. Here in the states, we hope our website spreads awareness, provides a little education, and some insight into life with Superficial Siderosis.

What Will You Do?


Not everyone can start a charity or find time to write. When you’re chronically ill, getting out of bed everyday is a big deal. We just want you to spread the word. To your healthcare providers, your family and your neighbors. If you can educate a few new people along your journey, then we all have a chance.




PSA for the grandparents: avoid the eggplant emoji when texting

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