Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be more patients diagnosed with superficial siderosis. My neurologist told me that… Read More... "What a Year! 2022 Summary"
From Tweetup to Meetup It had been over three years since I’d first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and… Read More... "A Rare Reunion"
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a case of rummaging through Google to find things of relevance and chatting to other patients who had been diagnosed with… Read More... "What the SSRA Means to Me"
It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been asked, I would have fallen to pieces. I did, anyway. On Tuesday, I had to have my last beloved horse… Read More... "It’s OK not to be OK"
Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to the spontaneity of the symptoms, which regularly leads to a complete change in routine, where I find myself juggling the… Read More... "The Daily Frustrations of Superficial Siderosis"
Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve shared what’s been going on with Gary. Our living with superficial siderosis. I’ve been reluctant to… Read More... "Running on Empty"
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,… Read More... "Just Go Home And Live With It"
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… Read More... "Julianne’s Story"
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… Read More... "Remembering What it is Like to Get Out"
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… Read More... "Research Day"
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… Read More... "My Last Music Festival"
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… Read More... "The Struggle Of Dual Neurological Conditions"
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… Read More... "Facing Down Coronavirus"
I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had both seen patients with Superficial siderosis, so we were making a connection to share information. One of them commented we had no idea of what was heading here to the U.S. I made a mental note to do a little preparation because that’s my nature. Read More... "Living In Upside Down World"
My Life With Superficial Siderosis In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition which is caused by bleeding into the cerebrospinal fluid over a sustained period of time. I had a brain tumour removed from… Read More... "A Day In My Life"
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a diagnosis. Gary’s story timeline has always remained closely aligned with physician estimates. The inescapable reality we must… Read More... "Inescapable Realities"
