- Personal Stories
Inescapable Realities
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend…
Read More » - Vision
Eye on Nystagmus
A 2021 Update Learning About Nystagmus It was late 2014. Gary and I were waiting for him to be seen…
Read More » - Advocacy
Meet David M.Dickson Jr.
David M. Dickson Jr. has always enjoyed a zest for an active life. From neighborhood quarterback to surfing, fishing, weightlifting,…
Read More » - Chelation Therapy
The Decision To Choose Chelation Therapy
Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early…
Read More » - Neurological Reserve
Living With Superficial Siderosis
Saturday morning may have begun at our local community urgent care but it soon turned into a run to the…
Read More » - Neurological Reserve
Living With A Compromised Neurological Reserve
Metabolic stress is not a friend to the very young, elderly, or those who’ve been dealing with superficial siderosis for…
Read More » - SSRA
A Tough Decision
I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do…
Read More » - Swallow
Small Victories
I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks…
Read More » - Education
Who Doesn’t Love a Freebie?
Everyone loves something free but too often there’s some kind of string attached. The item might be free but the…
Read More » - SSRA
Introducing the Superficial Siderosis Research Alliance
Meet Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience…
Read More » - SSRA
Meet Dr. Michael Levy
The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor.…
Read More » - Treatment Journey
Radio Silence
Radio Silence You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step…
Read More » - Advocacy
Patience
If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight.…
Read More » - Perspective
The Ripple Effect Of Chronic Illness
The Ripple Effect Of Chronic Illness Most of us will never plan on becoming full-time caregivers. However, some will tackle…
Read More » - Patient Registry
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,…
Read More » - Advocacy
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…
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