Author: Living With Superficial Siderosis

Patience
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....
By Living With Superficial Siderosis Published April 16, 2019 Our Community
The Ripple Effect Of Chronic Illness
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-...
By Living With Superficial Siderosis Published March 29, 2019 Perspective
The Pathway To Healing
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...
By Living With Superficial Siderosis Published March 27, 2019 Research
Making Our Voice Heard
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...
By Living With Superficial Siderosis Published March 8, 2019 Our Community
Rare Disease Week 2019 on Capitol Hill
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...
By Living With Superficial Siderosis Published February 20, 2019 Our Community
Your Daily Medications
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 time is it? Did I take my pills? Did I forget my medicine? What’s next when memory becomes such a problem your reminder strategies begin to fail?
By Living With Superficial Siderosis Published January 27, 2019 Symptoms
Spotlight Profile: Amanda Fearn-Banfield
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...
By Living With Superficial Siderosis Published January 20, 2019 Our Community
Touching The Positives
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...
By Living With Superficial Siderosis Published January 7, 2019 Perspective
Surviving The Neurology Ride
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...
By Living With Superficial Siderosis Published December 19, 2018 Perspective, Symptoms
Our Superficial Siderosis Community: Meet Fiona Parkinson
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...
By Living With Superficial Siderosis Published December 5, 2018 Our Community