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; patients were diagnosed, in the past, at an older age due to the slow nature of the progression, but newer MRI technology is making earlier detection possible. All confirmed superficial siderosis patients had experienced unnatural blood infiltration into their central nervous system; trauma, surgery, aneurysm or stroke that caused long-term bleeding.…

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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.

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A New Chapter For 2018

Living with superficial siderosis website

Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready to move forward and welcome a new chapter for 2018. I hope you’ve had a chance to check out our new Tidbits And News page. We needed an area to post bits of news we run across or research topics. It’s an understatement to say I read a lot, so it’s always exciting to stumble across a story in mainstream media about a fellow SS’er. I’ve added a new one today.  Speaking of a new chapter One blog topic I hope to cover this year is nanotechnology. There is interesting research relating to nano-particles being combined with chelators to target hemosiderin in the brain and spine without affecting the iron levels in the rest of your body. I’ve added four new research papers to our download file menu if you care to read them.  Looking ahead We have plans to expand…

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Welcome Accessibility

menu

If you’re a return visitor to our website, you may have noticed the crazy color and layout changes that have been happening multiple times a day.   Gary’s eyesight has made reading more difficult not only here, but on a lot of online sites he likes to visit. Web accessibility is vital to people with disabilities, so we felt an obligation to try removing barriers that prevent natural interaction with our content. Our primary audience is people with disabilities. Sites like this one have a responsibility to develop content all users can enjoy equal access to both information and functionality. So we’ve done a little winter clean-up, changed the front page photos and found a new color theme. Because honestly, it’s rather sad seeing the same thing for two years. We’ve added two new features this week. The first is located on the top right corner of our site.  If you click on the accessibility icon, it will bring up a menu of options for the sight impaired. You have the opportunity to view the site in grey scale. Underline all the links, so no need to search forever. Magnify anything you’d like to get a closer peek at or change…

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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 awareness, provide a little education, and some of our insights.  What Will You Do?     Not everyone can start a charity or find time for a blog. When you’re chronically ill, getting out of bed some days is a big deal. We just want you to spread the word.…

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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 prolonged and comfortable quality of life for their patient. The first problem is Ferriprox. Many doctors seem to consider it nothing more than experimental. When you do find a provider willing to prescribe it dosage protocols vary between doctors so much you can’t possibly track its effectiveness. Secondly, whether you…

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