Connect
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’s 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 connected with only 50+ superficial siderosis cases worldwide. He raised that number to more than 100 confirmed cases. Unfortunately, Dave can no longer update his blog due to Superficial siderosis’s effects, 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 gather for peer interaction, compare notes virtually, 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 480 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
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 Facebook groups are private, so you’ll need to submit a join request.
CIAO, Vi mando un saluto
mi chiamo Laura
mio papà è morto di SSS nel 2017
Dave hill mi è stato tanto di supporto nel periodo in cui cercavo informazioni per la sua malattia. E’ stato più facile affrontare i sintomi che si presentavano e le difficoltà che arrivavano.
perciò grazie Dave (come sta ora?)e grazie a voi per quello che fate
un grande abbraccio e tanta forza.
My husband has been diagnosed with superficial siderosis, and I am the caregiver. I would love to join a chat group or read about what everyone is dealing with. What is the best way to deal with the confusion and sundowning?
Hi Kathryn, we are in the process of organizing monthly real-time chats for caregivers. Our plan is to have these chats led by caregivers who have experienced a variety of problems including personality changes, daily tasks, and end of life. Right now we are waiting for our volunteers to feel strong enough to begin. One has just recently lost her husband so her emotions are still a little raw. I’ll be glad to let you know when they begin.
Hello,
I’ve just received a preliminary diagnosis of SS. I’m naturally looking at any source of information I can find, while waiting for my upcoming neurology appointment. Are their any community groups that are not on Facebook/FB-platforms? I left a few years ago and have no intention of returning, but am looking to connect with others diagnosed with SS.
Thank you.
Hello, my name is Beven and I have a sister’n’law that has been recently diagnosed with SS. I’m trying to assist her to obtain information as there does not seem to be much help here in New Zealand. I would appreciate any help you may offer.
Hello Beven, I have reached out to some fellow New Zealanders for some information. I will email you as soon as I hear back from someone.
Good day
Do you have a whatspp group to communicate and how do I join the ss group, please advise
Hi Ziyaad, First let me apologize for taking so long to respond. We were out of town. We are not using WhatsApp but there are two groups you can join on Facebook. Both groups are private so you will have to submit a join request.
Thank you for the support you give to the Silent Bleed charity. We are indeed not alone. Together, we’re stronger.
Good day
Do you have a whatspp group to communicate and how do I join the ss group, please advise
I’m not on Facebook, my intention is to shout it from the rooftops. This needs to be out there, too many people haven’t the slightest knowledge of what I’m talking about. From my hearing aid person to pain injection Doctor, but I am informing them.