Often a newly diagnosed superficial siderosis patient, their family, and friends feel overwhelmed. Finding a support network is a must. Remember, you are not alone. The first thing we did after Gary’s diagnosis was search Google. What is Superficial Siderosis?
Google led us to an excellent blog site by New Zealander Dave Hill. It offered the only information written from the patient point of view. Dave’s blog explained a little of what we were about to face in easy to understand language. When Dave began reaching out via email, he found only 50+/- recorded superficial siderosis cases worldwide. He raised that number by connecting to more than 100 confirmed cases. Dave unfortunately can no longer update his blog due to health reasons but thanks to his efforts, fellow superficial siderosis community members began to make a connection.
Our Support Community
Social media has made it easy to connect people from the farthest corners of the world. Our community group members give the newly diagnosed a place to virtually gather for peer interaction, compare notes, and share stories. Most importantly, it’s a private place to vent during the bad days when those surrounding you haven’t a clue what you are experiencing.
Superficial Siderosis Facebook Group
The longest running superficial siderosis Facebook group, moderated by Joe Safieh and Matt Dvierin, evolved from the connections made in Dave Hill’s original superficial siderosis blog site. It began with fewer than 50 members and has now grown to more than 375 patients, caregivers, medical professionals, and healthcare industry representatives.
The Silent Bleed Charity
The Silent Bleed website was founded by Jason Roberts, a Superficial Siderosis sufferer who needed help. With the assistance of friends, he turned the spark of an idea into reality. This UK registered charity focuses on fundraising activities and if you’re struggling to find relevant patient information, then you’ve come to the right place.
Find out more about superficial siderosis, view a webinar, download or order printed leaflets to share with family, friends, and physicians. Our Q&A pages feature answers to your questions on symptoms, medication, and life with Superficial Siderosis by Dr. Levy, to help you make decisions about the best way forward.
We’ve no option but to fight back. Quiz nights, live music, charity fun-runs, from the stupid to the sublime, we’ve done it to raise cash for research. Talk to us if you’d like to run your own event and have some fun while you’re doing it.
The Silent Bleed Charity Facebook Group
The Silent Bleed Charity Facebook group is moderated by Jason Roberts, founder of The Silent Bleed. It’s a private group where members can discuss fundraising ideas, share news, ask questions, and discuss the roadblocks of life with Superficial Siderosis. Growing by leaps and bounds, it now counts more than 300 members
Friends of Superficial Siderosis Suffers Unite
This Facebook group, moderated by Janice Toovey and sponsored by The Silent Bleed, is for the caregivers, friends, and family of Superficial Siderosis patients. Janice is the mother and caregiver of Superficial Siderosis patient Paul Toovey. This group is closed to patients; it’s a private place to ask questions, find support and discuss the issues caregivers face.
All of these Facebook groups are private, so you’ll need to submit a join request.