- Advocacy
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…
Read More » - Education
Your Daily Medications
Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200…
Read More » - Advocacy
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…
Read More » - Perspective
Touching The Positives
Touching The Positives I recently came across an interesting question, If you were cured today, what would you do? For people…
Read More » - Treatment Journey
Surviving The Neurology Ride
The Patient Experience With The Neurology Ride A visit to Gary’s neurologist often brings to mind when you step up…
Read More » - Personal Stories
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,…
Read More » - Education
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…
Read More » - Vision
Neurodegenerative Vision Problems
You move your eyes more often than your heart beats. Vision problems are one of the mysterious, unexplained symptoms people…
Read More » - Advocacy
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…
Read More » - Chelation Therapy
Countdown To The Last MRI
Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing…
Read More » - Education
The Question Of Restless Leg Syndrome
Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there…
Read More » - Personal Stories
Camping with a Chronic Illness
No, I’m sorry, we can’t. It’s become our standard answer to most invitations now. Our niece sent a text last…
Read More » - Treatment Journey
Summertime Neurology Blues
We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides…
Read More » - Advocacy
Meet Rhys Holmes
Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished…
Read More » - Treatment Journey
Decoding The Superficial Siderosis MRI
Decoding the Superficial Siderosis MRI There has been a definite increase in people diagnosed with superficial siderosis. The improvements in…
Read More » - Chelation Therapy
Understanding Chelation Therapy
The Role Of Chelation In Superficial Siderosis There is some confusion when it comes to understanding chelation therapy and superficial…
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