The Common Thread Searching For The Unexplained

common thread

Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder. Is there a common thread to be found? I find myself thinking about this subject a lot. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel. We’re not medical professionals but what if we brainstorm a little and toss around a few ideas. First, let’s talk about what we do know. Superficial Siderosis is not hereditary; you aren’t born with it. Superficial Siderosis is not contagious; you can’t spread it or catch it.  Age or gender do not play a significant role in the diagnosis;…

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Staying Woke:

Superficial Siderosis Awareness

Get Woke   I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandkids ages range from a first-year 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. It stays with me, this word. Woke. People are willing to be engaged.   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 flyers, selling wristbands and hosting fundraisers over in the U.K. Here in the states, we hope our blog will help spread…

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Superficial Siderosis : Education and Standard of Care

treatment protocol

Superficial Siderosis physician education and a Standard of Care policy are two areas that need work. Doctors touch on superficial siderosis during their medical training. But it presents so rarely during their everyday practice it’s no wonder a diagnosis is either considered inconsequential or untreatable. Even when presented with new research some physicians feel reviewing fresh data is not a priority. Need to know. If you’ll never have to treat it why bother? In the United States, with any other serious condition, there is a national standard of care for your particular diagnosis. A documented clinical guideline for your physician to follow. No matter where you live geographically, your physician should have access to a standard treatment protocol. In their defense, we now have a treatment option that was not available five years ago. The progression of Superficial Siderosis is better understood now. The knowledgeable physician can now offer hope of a…

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