The Power Of Community

power of community

We’re proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Find her powerful, insightful and informative blog site here. –  thesilentbleed.co.uk   Fear is a powerful emotion. Anxiety shows no sympathy. Fear destroys if you give it power. A rare disease diagnosis, especially one as unknown as Superficial Siderosis, forces you to face your worst fears. It’s hard. We are not built to face fear alone. Thankfully, early patients and caregivers sparked the creation of our most powerful resource. Community. Your future has changed so how should you plan? How is your family going to be affected? Where should you look for care?. Chronic illness brings countless unanswered questions. The very nature of superficial siderosis or any rare disease should make finding your community a priority. One person may struggle to search for answers, but there is an astounding well of knowledge waiting for your questions. The wisdom of community is powerful. You’ll find your community happy to offer support no matter if you’re facing a new medical procedure, fighting through pain,  dealing with a new symptom or need a …….read more here

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Our Superficial Siderosis Community: Meet Robert Cameron

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  Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for more than 25 years, Captain Robert traveled the world; Australia, New Zealand, South Africa, Japan and the United States making memories for a lifetime. A meningocele was found wrapped around the nerves at the T-4 area of Roberts’ spine. The discovery led to a 12-hour surgery and resulted in an uncontained slow bleed. In 2005, a diagnosis of superficial siderosis changed his course. Retirement finds him splitting his time between Florida, where he is he under the care of Dr. James Meschia, Head of Neurology Jacksonville Mayo Clinic and his summer home on Nantucket island. Opting to give chelation therapy a chance, he feels there has been a slowing of the progression and even seen some improvement. Not one to let an opportunity slip past he decided to battle back against memory loss issues and exercise his mind by tackling his lifelong dream of writing. During his time as a sea captain, he was witness to the beautiful marine…

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Time to Rare Up

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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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Life Expectancy of Superficial Siderosis Patients

life expectancy

Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That word fatal is a definite attention grab. The day we found out about superficial siderosis I read that statement and my heart dropped. Three years into this journey and we can add some personal insight into understanding the nature of this disease. If you study possible combinations of symptoms that could assault you, it should become clear while your body and psyche will suffer none are life-threatening in an immediate sense. It is a fair assumption the toll on your system is punishing. The thought of autonomic problems or dementia is alarming, but only a small percentage will ever face these issues. We know that in the early stages superficial siderosis moves slowly   Symptoms creep along driving you crazy, but it does take time. Twenty-two years passed after Gary’s tumor removal before his symptoms progressed to where he had to change his life radically. There does seem to be a…

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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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