When Neurology Has No Answers Greetings, fellow Superficial Siderosis patients; my name is Bena Travis. I’m a 62-year-old retired florist and wedding planner living in the USA’s beautiful Western Kentucky lakes area. My husband and I live on the lake,…
Julianne’s Story
Not A Head Cold? My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island state located 240 km (150 mi) south of the Australian mainland. I was…
The Hazard of Blood Thinners
The Anticoagulant Effect on Active Bleeds Suppose you have an identified or suspected active bleed. In that case, your doctors need to be aware of the hazard blood thinners pose to your hemosiderin layer. Your body may have taken years…
Sometimes You Need A Win For Team Chelation
I was diagnosed with Superficial siderosis in 2015, but it was late 2017 before I finally found a neurologist who was willing to listen and help me in any way he could. He agreed deferiprone (Ferriprox) was the only treatment…
Knocking Out The Brain Zaps
Did they work the first-time round? It had been tough for me to tell if the first course of nerve blockers (Greater Occipital Nerve Block) worked now that a few weeks had gone by. I kept quite an extensive log…
Remembering What it is Like to Get Out
Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however, it wasn’t without a huge wave of anxiety. After all, I had only been out with them once in about…
Research Day
Waking up for the Big Day I woke up to a bad headache, probably a bit of nerves and excitement about going to the best hearing institution in the United Kingdom. After all, I’m a musician and what’s the fun…
Do I Still Have An Active Bleed?
Arriving at the Hospital The day had finally arrived; it was time to venture to the hospital in Cardiff for my first lumbar puncture in nearly two years. I have had many lumbar punctures since I was 8 years old,…
My Last Music Festival
Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since I had turned 20. Camping, hiking, and watching my favourite bands play was always so much fun, and I’m so…
How To Block The Agony Of Brain Zaps
The Slow Movement of Pandemic Care Having a rare condition can make it hard to get information as it is, but during the Covid-19 pandemic it has stepped up a notch or two. Usually, I contact my consultant via email…
The Long Journey Here | Neurosurgery
Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, the search for information. In May of 2015, while we were still in an early stage of information gathering after Gary’s diagnosis, I created…
Will Neglecting Your Hearing Loss Really Hurt Your Cognitive Ability?
Hearing loss is now one of the leading causes of disability worldwide, affecting more than six percent of the population. The impact on people’s lives is substantial; difficulty with communication, social functioning, feelings of social isolation, employment opportunities, and depression.…
The Harsh Reality Of Falling Down
Falling Let’s face it, those of us with Superficial Siderosis have trouble navigating. Steps, floors, rugs, rugged terrain, small hills, clumps of dirt, or irregular pathways, we are, in a word, screwed. Damned if we do, damned if we don’t. …
After Diagnosis
Fours Years On To say it has been a rollercoaster of events would be an understatement. With twists and turns coming so often, I have finally found a bit of stability and haven’t had a hospital admission in quite some…
A Sneak Peek Into The COVID-19 Immunization Journey
Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine. For those who also face the dual concern of balancing a rare disorder’s symptoms against contracting a highly contagious virus,…
The Painful Farewell To The Sounds Of Life
The Progression of Hearing Loss in Superficial Siderosis Hearing loss is one of the most common symptoms of Superficial Siderosis. For me, I’d say it was the first symptom I noticed; it wasn’t until five years after the hearing loss…
The Struggle Of Dual Neurological Conditions
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling neurological conditions as well. In late 2001, three years after the removal of a benign brain tumour, I was diagnosed…
Facing Down Coronavirus
This has been a banner year for anxiety with the many underlying conditions Superficial Siderosis patients face daily. The lack of early information; how the Coronavirus would affect the S.S. community. These were all added stressors. We made a personal…
Is Neuroprotection The Answer?
Can The Progression Of Superficial Siderosis Be Slowed? The holy grail of any rare disorder is discovering the cure. With Superficial Siderosis, so far, chelation therapy has offered the only solution for removing the iron. Where does this leave a…
Retraining The Brain
Neuro physiotherapy Around August 2015, I noticed my balance was starting to deteriorate. Since then, it has gradually gotten worse, and at times my legs become so stiff that I struggle to walk. I decided to invest in a wheelchair…