Today, February 28th, marks Rare Disease Day—a global movement dedicated to raising awareness and advocating for the millions of people affected by rare diseases worldwide. At the Superficial Siderosis Research Alliance (SSRA), we are committed to supporting individuals and families impacted by Superficial Siderosis (SS), a rare neurodegenerative disorder caused by chronic bleeding into the central nervous system.
In honor of Rare Disease Day, we are excited to announce the release of our newly updated U.S. Superficial Siderosis Information Brochure, which provides essential information about diagnosis, symptoms, and treatment options.
The UK and Australian versions will be available soon, ensuring that patients and caregivers worldwide have access to accurate, up-to-date information.
A Comprehensive Guide to Understanding Superficial Siderosis
For those unfamiliar with Superficial Siderosis, this condition occurs when iron from repeated internal bleeding accumulates in the brain and spinal cord. Over time, this iron buildup leads to oxidative stress, nerve damage, and a progressive decline in neurological function. Many patients face debilitating symptoms, including:
✅ Progressive hearing lossOverview In approximately 95% of superficial siderosis patie...
✅ Balance and mobility issues
✅ Cognitive impairmentOverview Cognition is the range of high-level brain function...
✅ Chronic pain and neuropathyOverview The peripheral nervous system is divided into three...
✅ Bladder and bowel dysfunction
Because Superficial Siderosis is rare, many patients endure years of misdiagnoses before receiving the correct medical evaluation. Early diagnosis is critical, and this brochure aims to help patients and healthcare professionals recognize the signs of the disease sooner.
What’s Inside the Updated Brochure?
The 2025 U.S. Superficial Siderosis Information Brochure has been carefully updated to reflect the latest medical research, treatment guidelines, and patient care recommendations.
🔹 Clear Explanations of Superficial Siderosis Types—Understanding classical (Type 1) and Secondary (Type 2) Superficial Siderosis is essential for proper treatment planning. The brochure outlines each type’s differences, causes, and progression patterns.
🔹 Symptom Management and Treatment Options—Patients and caregivers will find valuable insights into managing symptoms, including pharmaceutical treatments, chelation therapy, and emerging therapeutic strategies.
🔹 The Importance of Controlling Iron Exposure – Iron toxicity is central to disease progression. The brochure details why identifying and stopping the source of bleeding is crucial and discusses the risks and benefits of potential surgical interventions.
🔹 Expert-Reviewed Content—Medical professionals specializing in Superficial Siderosis have carefully reviewed the information to ensure accuracy and reliability.
🔹 Resources for Patients and Families – The brochure includes ways to connect with the SSRA and access additional educational materials from support networks to research updates.
Why This Matters on Rare Disease Day
Rare Disease Day is about more than just awareness—it’s about action, empowerment, and support for those navigating life with a rare condition. At SSRA, knowledge is power, and providing accessible, research-backed information is one of the most effective ways to help patients advocate for their health.
This brochure is a crucial step forward in education and outreach, ensuring that patients, caregivers, and medical professionals are equipped with the latest insights into Superficial Siderosis care.
How to Get Your Copy
Order a Free Print Copy – If you’d like a physical copy of the updated U.S. Superficial Siderosis Information Brochure, you can request one through our SSRA website.
Download a Digital Copy – Prefer instant access? Download a PDF version.
Request a Bulk Order – Healthcare providers, advocacy groups, and patient organizations can submit a special request for bundled copies for distribution at events, clinics, and educational seminars.
Stay Tuned! The UK and Australian versions of the brochure are coming soon. We are committed to ensuring that patients worldwide have access to this essential resource.
Join Us in Spreading Awareness
On this Rare Disease Day, we invite you to share this updated brochure with your community. Whether you’re a patient, caregiver, researcher, or advocate, your voice helps bring attention to the challenges those living with Superficial Siderosis face.
Together, we can raise awareness, drive research, and improve the lives of those affected by this rare disorder.
Join the conversation online by using #RareDiseaseDay and tagging @SSRA.
Thank you for being part of our mission to make a difference in the Superficial Siderosis community.
My medical history is complicated. I was having alot of issues including bilateral numbness in lower legs along with bilateral numbness and complications with regards to pain, deformities in my hands and carpel tunnel
syndrome which was obvious with abnormalities in my emgs growing progressively worse. I was ordered 3 MRIs all together in 2023. One to confirm inflammatory arthritis in my hand and arm. The other two MRIs were ordered. One was of my head and neck. Another was lumbar and thoracic spine. I had received an MRI in 2018 to look for MS. As a young person years ago I was diagnosed with MS. Anyway, the radiology reports in 2023 showed a myelomalacia and compression of the cervical cord along with significant disc disease (spondylolisthesis), what looked to be MS lesions at thoracic 2, and mid thoracic down. There was adhesive arachnoiditis from L1-S-1. The changes at my cervical spine and new findings since 2018 was an immediate concern to a surgeon at Hamilton General hospital I was referred to by my neurologist. His office called and suddenly it was imperative to have surgery. I was concerned because of my worsening balance and pain issues along with numbness and worsening
deformaties struggling to use my hands. I also live with continuous tinnitus. It was all very confusing as my Rheumatologist was reading the radiology report and mentioned the superficial siderosis, skipping over it to say “nope, well don’t know what that is?”. Since I have a background in nursing studies, I started to do some research on my own. I had major spinal surgery last year in spring of 2024. They
operated on C-2 at the axis through to T-1 doing a posterior instrumented lamenectomy
with grafting and fusion. I was in hospital at HGH a total of two weeks with the first week in stepdown. The surgeon said he couldn’t promise that I would get better but should get no worse, though admitting sometimes more surgery is needed. I am not sure if I should have had the surgery. Walking is worse as is my balance and I have problems with swallowing
and gagging now also which is a struggle. I apologize for the length of this. But knowing that superficial siderosis is part of my presentation, and that neither my neurologist or
Orthopedic surgeon are familiar with it and stated they have never treated a case, I looked for a support group on Facebook. That is how I got here. Thank you, Rebecca in Canada