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;…

Continue reading….

Time to Rare Up

rarediseaseday.org

Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over 7000 rare diseases join forces to raise awareness. The movement began in Europe in 2008 thanks to EURORDIS with 65 countries now adding their voices.  The theme for Rare Disease Day 2018  is RESEARCH You may be wondering what you can do as an individual to show your support. RareDiseaseDay.us is offering everyone the opportunity to take part in this year’s social media campaign Handprints Across America®. They ask patients, families, and friends to print out the Handprints Across America flyer and take a photo of yourself, your family, your friends, your colleagues, fellow students, or others, holding it. Share it on Instagram or Twitter with the hashtag #HandprintsAcrossAmerica, #RareDiseaseDay, and #YourDisease (#SuperficalSiderosis). Your photo will be included in a group stream dedicated to showing the world the faces of those impacted by rare and chronic illness.

Continue reading….

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…

Continue reading….