The Power Of Community

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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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