Welcome to the Silent Bleed Quarterly Newsletter |
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Hi, welcome to our quarterly newsletter. We aim to connect our members, inform everyone about the latest research we have access to and give everyone a focus so that we can get ahead of Superficial Siderosis (SS). In this edition, we have the following articles for you; Where is my nearest Neurologist who knows about Superficial Siderosis? Strategies for Thriving with Superficial Siderosis In Loving Memory: A Tribute to Lives Lost to Superficial Siderosis Meet Some of the Champions - Patricia Hardman, Mary Smith and Paul Toovey My Cochlear Implant Journey- A Personal Diary Do you have some helpful information that could benefit our SS community? Reply to this email, and let's discuss how to present it best. |
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Wheres my nearest Neurologist that knows about Superficial Siderosis? |
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I (Jason Roberts) am constantly seeing within our group, members struggling to find a neurologist who is aware of SS; I know only too well the panic and frustration of not being able to find the right care. The TSB is excited and proud to announce its next project: informing all neurologists around the world about SS. This will by no means be easy, but you can help us achieve this goal. Please read on here to see how we plan to achieve this. |
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Strategies for Thriving with Superficial Siderosis |
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I (Jason Roberts) have SS myself and know too well the problems it brings; Fatima has researched how to make our lives easier. Living with Superficial Siderosis (SS) presents unique challenges; however, you can overcome them with the right tools and mindset and lead a fulfilling Life. In this article, we'll explore practical tips and insights from the Superficial Siderosis (SS) community to help you navigate the daily obstacles and take control of your well-being. Click here to read full article |
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In Loving Memory: A Tribute to Lives Lost to Superficial Siderosis |
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Since the creation of the Silent Bleed I have seen and known many individuals that have passed on due to Superficial Siderosis. This memorial page serves as a space for remembrance, reflection, and education. It is a testament to the lives that have touched us and a reminder of the importance of recognising and researching this disease to prevent future losses. Please click here for the full article. |
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Meet Some of the Champions: United in Their Struggle Against SS, Sharing Stories of Courage |
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We're honoured to feature the inspiring stories of three remarkable individuals from our Superficial Siderosis community. Each has kindly shared their journey with SS, offering unique insights and experiences that we believe will resonate with many of our readers. We understand that living with SS can be challenging. We believe that by coming together, sharing knowledge, and supporting one another, you can improve the quality of your life and contribute to advancing understanding of this rare condition. |
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Patricia Hardman In the world of rare neurological conditions, Superficial Siderosis (SS) stands out as a particularly challenging diagnosis. This is the story of Patricia Hardman, a dedicated educator whose life took an unexpected turn when faced with this elusive condition. Her journey, beginning in 2011, showcases the complexities of SS diagnosis and the resilience required to adapt to its many symptoms. Patricia's narrative offers insight, hope, and understanding to fellow SS survivors and sheds light on the importance of persistence in seeking answers to unexplained health changes. As we delve into her experience, we'll explore the impact of SS on daily life, the challenges of diagnosis, and the strength found in adapting to a new normal. Read on here. |
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Mary Smith In the realm of neurological disorders, Mary Smith's story stands out as a testament to resilience and the complexity of the human body. For 36 years, Mary had been living with Multiple Sclerosis (MS), navigating its challenges with determination and grace. Little did she know that her journey would take an unexpected turn, adding another layer to her already complex medical narrative. Read on here. |
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Paul Toovey In the world of rare medical conditions, few stories are as compelling and inspiring as that of Paul Toovey, a survivor of Superficial Siderosis and a seven-stroke. His journey, spanning nearly three decades, is a testament to human resilience in the face of extraordinary challenges. From a childhood marred by unexpected strokes to navigating life with a condition few understand, Paul's story is one of courage, adaptation, and unwavering spirit. As we explore his experiences, we glimpse the physical toll of Superficial Siderosis and the strength of character it can forge. Paul's narrative offers hope and understanding to fellow survivors and sheds light on a condition that often goes unrecognised. Join us as we explore the remarkable journey of a man who refused to let his diagnosis define his life. Read on here. |
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My Cochlear Implant Journey- A Personal Diary |
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Jason Roberts The founder of Silent Bleed. Jason's journey takes us through the emotional and physical challenges of hearing loss due to SS and his brave decision to pursue cochlear implant surgery. His narrative offers a candid look at the process to outcome, from the initial doubts and concerns to the Eye-opening moments. Please click here for the blog. Fatima Adu |
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