Deborah Hatch
Living with Superficial Siderosis
by Deborah Hatch
1M 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
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2023 In Summary
Living with Superficial Siderosis
by Rhys Holmes
3M 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
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Coping with Urinary Incontinence
Living with Superficial Siderosis
by Rori Daniel
7M 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
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Captain Robert Cameron
Living with Superficial Siderosis
by Rori Daniel
7M 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
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The Psychological Journey with Superficial Siderosis
Living with Superficial Siderosis
by Rori Daniel
7M 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
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The Balance Struggle of Neurodegenerative Disorders
Living with Superficial Siderosis
by Rori Daniel
7M ago
Understanding the intricate relationship between vision, balance, and neurodegenerative disorders like Superficial Siderosis is essential ..read more
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Embrace the Crunch: A Journey into Anosmia and Superficial Siderosis
Living with Superficial Siderosis
by Rori Daniel
9M 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
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The Neurological Alliance Petition Hand-in
Living with Superficial Siderosis
by Rhys Holmes
10M ago
Department of Health and Social Care Members of The Neurological Alliance Co Production Group (a group of people from across the U.K. with lived experiences of neurological conditions) and The Neurological Alliance Staff, met with representatives from the Department of Health and Social Care to hand in the signed petition of over 19,000 signatures supporting the #BackThe1in6 campaign. The aim of the campaign is for all four governments of the U.K. to set up a neurological task force to analyse and address the shortcomings in neurological care. The name of the campaign derives from the fact t ..read more
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Sundowning and Cognitive Decline in Superficial Siderosis
Living with Superficial Siderosis
by Rori Daniel
10M ago
Sundowning Sundowning in late-stage SS is less common than in other neurodegenerative diseases. However, some patients may still experience symptoms, especially if there’s a coexisting disease or early signs of dementia. Progression to true dementia in superficial siderosis is still considered very rare. Sundowning refers to an increase in confusion, restlessness, agitation, and behavioral problems that typically occur during the late afternoon or evening, ergo the term “sundowning.” The underlying reasons are not fully understood, but disruptions to the brain’s internal clock and a decreased ..read more
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A Year of Struggle and Change
Living with Superficial Siderosis
by Rori Daniel
10M ago
A year of struggle and change; that’s what it has been for Gary, our family, and myself. Emerging from the isolation of the Covid lockdown, we were buoyed with optimism. A ray of hope had sparked when Gary’s neurosurgeon successfully remedied his active bleed that had hung over us for years. Meanwhile, I anxiously awaited news of my superficial siderosis natural history study grant proposal. However, after almost two years of avoiding crowded spaces, Covid hit us when we ventured out for the first time in July. Three weeks later, after two alarming falls at home, Gary could not walk by mornin ..read more
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