Posted Tuesday April 16, 2019 by Living With Superficial Siderosis
If there is a single lesson our superficial siderosis community should be...
If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight. We always seem to be waiting -appointments, test results, news....
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Posted Friday March 29, 2019 by Living With Superficial Siderosis
The role of becoming a caregiver will alter your life. Most in...
The role of becoming a caregiver will alter your life. Most in our group tackle this task with laser focus. There are no second thoughts or questions. Someone we love-...
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Posted Wednesday March 27, 2019 by Living With Superficial Siderosis
What if research could identify a way to give your body a...
What if research could identify a way to give your body a fighting chance? Kick-start the path to healing? Ataxia, sensorineural hearing loss, and myelopathy; These are the real enemies...
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Posted Friday March 08, 2019 by Living With Superficial Siderosis
Superficial siderosis is an ultra-rare condition with a small patient population. Our...
Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the journey to a diagnosis and then care. Too often hope...
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Posted Wednesday February 20, 2019 by Living With Superficial Siderosis
Living with Superficial Siderosis will be heading to Capitol Hill in Washington...
Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare disease advocates, patients, and caregivers from across the country. Representatives...
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Posted Sunday January 27, 2019 by Living With Superficial Siderosis
Imagine living a life that revolves around medication. I know many of...
Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200 pills a week with nine different daily dosage times. What...
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Posted Sunday January 20, 2019 by Living With Superficial Siderosis
Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not...
Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not only the behind-the-scenes force responsible for navigating The Silent Bleed Superficial Siderosis Charity through the complexities of the...
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Posted Monday January 07, 2019 by Living With Superficial Siderosis
I recently came across an interesting question, If you were cured today,...
I recently came across an interesting question, If you were cured today, what would you do? For people with a chronic condition or rare disease that’s a loaded question. What would...
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Posted Wednesday December 19, 2018 by Living With Superficial Siderosis
A visit to the neurologist often reminds me of stepping up to...
A visit to the neurologist often reminds me of stepping up to ride the tallest most twisty ride in the park. You start off slowly inching along, anticipating a thrilling...
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Posted Wednesday December 05, 2018 by Living With Superficial Siderosis
Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her...
Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm, animal menagerie, preserving award-winning homegrown food, and mothering three handsome...
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