Living with Superficial Siderosis
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A blog chronicling our life after a diagnosis of Superficial Siderosis and the symptoms it brings to the party.
Living with Superficial Siderosis
2M ago
Getting involved in events to raise awareness of superficial siderosis ..read more
Living with Superficial Siderosis
3M ago
Background It would be an understatement to say it has been life changing for me to have a perception of sound again, however, it is totally different from having naturally hearing (and no, I don’t mean everyone sounds like a robot). It takes the brain a while to adapt and understand new sounds through the ..read more
Living with Superficial Siderosis
3M ago
There aren’t really words to truly describe what it’s like going into brain surgery. I remember seeing a row of patients to my left, similarly in their cold hospital beds, waiting for their neurosurgeons to bring them into the operating room and begin a potentially life-altering surgery— the only difference is that they were all ..read more
Living with Superficial Siderosis
7M ago
Rare Disease UK “You’re quite a celebrity around here,” my neurologist says, as mum and I meet him in London for the third time since my Superficial Siderosis* diagnosis during March 2017. Surprisingly, for someone who’s found fame for having a rare disease, I’m relieved. It’s taken five years to get diagnosed, and specialists are ..read more
Living with Superficial Siderosis
10M ago
A Mixed Bag Like most years, 2023 has been full of up and downs. Awareness raising is going strong, and superficial siderosis is getting more recognition; although it’s nowhere near enough. There are people still fighting to get the care they deserve and having to educate their doctors through their lived experience. The superficial siderosis ..read more
Living with Superficial Siderosis
1y ago
Urinary incontinence is a medical condition characterized by the involuntary loss of urine. While we refer to incontinence as a symptom, it may be considered “secondary to superficial siderosis” because it results from the damage or dysfunction the deposition of iron causes. It can develop in various forms, ranging from a slight leakage to a ..read more
Living with Superficial Siderosis
1y ago
A Nostalgic Look Back: Celebrating Success Stories for SS MonthOriginally published in April 2018, we’re taking a moment during Superficial Siderosis Month to revisit some of the most inspiring personal journeys that have graced our pages. Today, we’re diving deep into the extraordinary life of Robert Cameron—a man who has navigated the high seas and ..read more
Living with Superficial Siderosis
1y ago
Living with Superficial Siderosis (SS) is not just a physical ordeal; it’s an emotional and psychological journey that affects not only the patient but also the caregivers and family members involved. This article explores the mental and emotional aspects of living with SS, offering perspectives from patients, caregivers, and adult children. We will also provide ..read more
Living with Superficial Siderosis
1y ago
Understanding the intricate relationship between vision, balance, and neurodegenerative disorders like Superficial Siderosis is essential ..read more
Living with Superficial Siderosis
1y ago
The Unseen Influence of Smell on Taste Most of us take for granted how our sense of smell enriches our tasting experiences. The joy of savoring intricate flavors vanishes when anosmia, or the loss of smell, sets in. This sudden shift, especially later in life, can be challenging. Anosmia and Superficial Siderosis: An Unexpected Pair ..read more