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…

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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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Life Expectancy of Superficial Siderosis Patients

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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…

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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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