The Superficial Siderosis charity

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Superficial siderosis (SS) is a rare neurological condition caused by chronic bleeding in the brain or spinal cord, leading to toxic iron buildup in the central nervous system (CNS). While hearing loss and balance issues are well-known symptoms, neuropathy—nerve damage in the peripheral nervous system—is a lesser-discussed but equally important aspect of SS.

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 What Is Neuropathy?

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Neuropathy is damage to the nerves outside the brain and spinal cord, leading to:

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• Tingling or numbness (often in hands and feet)
   

• Burning or shooting pains
   

• Muscle weakness or cramps
   

• Sensitivity to touch or temperature
   

• Poor coordination or balance
   

In SS, neuropathy may worsen overall symptoms and reduce independence, yet it’s often overlooked.

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 How Are SS and Neuropathy Linked?

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The link lies in iron toxicity from repeated microbleeds, which affects not just the brain and spinal cord, but also:

• Spinal nerve roots – leading to limb weakness, numbness, and mobility issues
   

• Cranial nerves – causing facial pain or numbness (e.g., trigeminal nerve)
   

• Peripheral nerves – where chronic iron exposure damages the myelin sheath, slowing nerve signal transmission

 

Symptoms to Watch For

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If you or someone you know is living with SS, be aware of these neuropathy warning signs:

• Burning, prickling, or loss of sensation
   

• Sharp, electric-like pains
   

• Muscle wasting or clumsiness in hands/feet
   

• Unusual response to cold or heat
   

• Difficulty walking or standing

 

Diagnosis & Treatment Options

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Diagnosing neuropathy in SS involves a combination of:

• Nerve conduction studies (NCS)
   

• Electromyography (EMG)
   

• MRI scans to assess spinal involvement
   

• Physical exams by neurologists
   

Treatment focuses on relief and support:

•  Chelation therapy (e.g., deferiprone) to reduce iron
   

•  Medications for nerve pain (gabapentin, amitriptyline, duloxetine)
   

•  Physiotherapy and occupational therapy
   

•  Mobility aids and daily living adaptations

 

Minding the Emotional Impact

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Neuropathy can affect not only the body but also mental health. Chronic pain, fatigue, and reduced mobility take a toll, making emotional support and community connection essential.

Groups like The Silent Bleed offer vital support networks. Peer encouragement, shared experiences, and education can ease isolation and help you navigate the journey with strength and hope.

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 In Closing

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Neuropathy is more than a footnote in SS—it’s a critical piece of the puzzle. Early recognition and a multidisciplinary approach can significantly improve outcomes.

If you're experiencing symptoms or caring for someone with SS, don’t dismiss signs of nerve damage. Advocate for thorough evaluations and seek support. Every informed step brings you closer to a better quality of life.

 For more stories, research updates, and resources, stay connected with our SS community.

 Have a question or experience to share? We’d love to hear from you – reply to this newsletter or visit our website.

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- Debbie Ebiniyi

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