Author: Living With Superficial Siderosis

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
Six Steps To Becoming A Better Friend
We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with...
By Living With Superficial Siderosis Published October 31, 2018 Education
Is It Time To Visit A Neuropyschologist?
Your brain is a complex system that controls your body, guides your thinking, and filters emotional response. When something like superficial siderosis damages neural function questions arise on how exactly...
By Living With Superficial Siderosis Published October 23, 2018 Symptoms
Superficial Siderosis Standard Of Care
In the United States, there is usually a national standard of care for a particular diagnosis. A documented clinical guideline for your physician to follow. No matter where you live geographically, your...
By Living With Superficial Siderosis Published October 10, 2018 Perspective
Does Superficial Siderosis Contribute To Cardiac Arrhythmia?
When you think life has settled in it chooses to get in your face, passing by at a crazy pace. Before his pacemaker placement, Gary’s heart rate was consistently slowing,...
By Living With Superficial Siderosis Published September 15, 2018 Symptoms
When Small Details Equal Giant Victories
Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was officially recognized by the U.S. Social Security Administration. On August 20,...
By Living With Superficial Siderosis Published August 21, 2018 Our Community