What is the Silent Bleed (aka TSB) and what's in it for you? Part 1
Founded in 2013 by Jason Roberts and Amanda Fearn, this was to be the start of the exposure of superficial siderosis.
The Silent bleed is the name we (those within our Facebook group) had elected as our charity name, an open competition to pick the Charity name was put on the Facebook group superficial siderosis which at that time consisted of only a few people, the winning name was provided by Janice Toovey, we had a competition for our logo of which Marybeth Sullivan Tello designed. Most amazing is that Marybeth did not only come up with the original design, she also made the digital design! Marybeth Sullivan TelloThe designer of our logo, Marybeth, had also written for us and created the digital image. Unfortunately SS took her from us, she was very interactive and a good friend of manyJanice TooveyCreator of our charity group name: Superficial Siderosis - The Silent Bleed" Paul's doctors in London always said the bleed lies silent in the body.
Ask a specialist
How important is that question you want to get answered however you can't get hold of a neurologist to get it answered? For sometime we have had Dr Levy voluntarily providing answers to the public with regards to some very personal and important questions. Since about 2015 the general public and SS sufferers have sent in 93 questions and received 93 Answers. This facility is priceless and continues to help so many people. Click here if you wish to ask a question or search through our answers
Our relationship with Facebook:
As the existing Facebook group could no longer deal with the demands needed to make SS information available to all as well as organising various things, we reached out to Facebook creating various groups for SS sufferers so they knew they were not alone and they were updated with new information. The groups we have at this time are:
Superficial Siderosis-The Silent Bleed strictly for those that have SS or their advocate, for intricate or personal help
WAKE UP to the Silent Bleed Events page - informing those on our Groups of musical Events as well as barbecues and get-togethers. Joining is open to all upon Answering questions
Friends of TSB Support group open to all upon a joining request, asking and answering questions.
Silent Bleed Volunteers: with all the events that we have taking place, some wish to hold an event, be a part of an event or simply contribute to an event. Joining is open to all upon answering questions (48 members)
The Silent Bleed management page: Management only
My SS buddy: If you have SS and would like to buddy up with someone local to you that has SS. This group is being organised to meet with data protection and will be available at that time
Superficial Siderosis Advocacy: If you have SS and require Advocasy, contact us here, If you wish to offer Advocasy, join this page. This group is being organised to meet with data protection and will be available at that time
Find my neurologist: If you don't know a neurologist that specialises in SS, contact us and we shall contact them with regards to the pathology which has been endorsed by UCL hospital. We are presently working on having the doctorate available to print off as well as to be sent on request. If we can get the doctorate available for everyone, the fear of not knowing will disappear just like the fear I had when I first found out
Our use of Facebook is very handy indeed, we have eight separate groups that many people on our mailing list are part of. The groups above were made on demand and so quite quickly, as we advertise them and make their purpose known, the groups grow. In our next edition due out in September we shall tell you more about what TSB can do for you.What would you like to see in the newsletter, what would you like to be permanently on the website? continue the chat, here
What is the Silent Bleed (aka TSB) and what's in it for you? Find out in part 2 to be released In September
We have nine groups related to SS and TSB in Facebook and a wealth of information in our website which we will look at in our next newsletter, what else would you like to see? Please click here to tell us more.
