Rare Disease Week On Capitol Hill

Living with Superficial Siderosis

• Julianne’s Superficial Siderosis Odyssey September 16, 2023
  Originally published in June 2021, we’re revisiting some of the most inspiring personal journeys gracing our pages. Today, we’re peeking into the extraordinary life of Julianne—a woman whose resilience and determination have turned superficial siderosis challenges into stepping stones. Tasmania, Australia Meet Julianne, a 64-year-old dynamo hailing from Devonport in northern Tasmania. For those unfamiliar […]
  Julianne Singline
• Coping with Urinary Incontinence September 12, 2023
  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 […]
  Rori Daniel
• Captain Robert Cameron September 7, 2023
  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 […]
  Rori Daniel
• When Neurology Has No Answers: My Journey Through the Maze of Superficial Siderosis September 5, 2023
  A Nostalgic Look Back: Celebrating Success Stories for SS Month 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 remembering the extraordinary journey of Bena Travis. When Neurology Has No Answers Hello, dear readers and fellow warriors in the battle […]
  Bena Travis
• The Psychological Journey with Superficial Siderosis September 1, 2023
  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 […]
  Rori Daniel
• The Balance Struggle of Neurodegenerative Disorders August 21, 2023
  Understanding the intricate relationship between vision, balance, and neurodegenerative disorders like Superficial Siderosis is essential.
  Rori Daniel