We're a tiny charity on a big mission
Please find a brief round-up on who we are and what we do below. Because it's so rare, it's likely that you haven't heard of Superficial Siderosis before, so we've included some information about the condition, how it affects everyday lives and what's being done to find a cure.
Too many people are losing their lives to this condition and we want to change this.
We're keen to work with you.
And publicity is key to achieving our aims. Please contact us for more information or call Amanda on 07870625357
The Silent Bleed - a charity from Aldershot, making a difference across the world.
What can happen when a small group of people decide to fight back against an incredibly rare condition?
It’s estimated that the condition, Superficial Siderosis affects just one person in three million. Symptoms often start with bad balance, hearing loss and sight problems but it will likely go on to affect bowel and bladder function, cause dementia and a whole raft of other debilitating issues. It’s serious and degenerative but few people know about it. UK-based charity The Silent Bleed want to do something about this.
A cruel condition for people who have already been through so much
A history of stroke, brain trauma or neurosurgery can cause a tiny, silent bleed and the residue this leaves behind irreversibly damages nerve cells and affects the way they work. It’s a degenerative condition.
Established in 2016 by Jason Roberts, The Silent Bleed is already making a difference. In touch with pioneering doctors in the USA as well as London, the charity is raising money for research. It’s also an important hub where sufferers can network, find answers and access specialist help. Raising awareness is also key: the charity believes that lack of information is affecting diagnosis rates and therefore research and funding for treatment.
There is only one pioneering drug (deferiprone) that’s known to help stem the progress of the condition and applications for funding to regional NHS boards are often turned down. An ongoing bleed may be stemmed with surgery if circumstances allow but it still doesn't put right the damage already done.
And not everyone can take deferiprone, those who do need to be closely monitored.
Getting Ahead of Superficial Siderosis
Linking bloggers, doctors and a strong Facebook community, the group registered as a charity in 2016, established a website (which is currently being overhauled) and the aim is to found satellite groups around the world. Through research, awareness and networking, the charity hopes to relieve the panic, suffering and confusion that can arise when someone is diagnosed with this rare, cruel and life-changing condition.
More and more people get in touch with the charity every week looking for help and in order to assist them, the team needs to grow.
Members of the press, anyone who’d like to host a fund-raising event, or generous people with skills that they’d like to lend to this small, friendly charity with big dreams, should call Amanda on 07870 625357 or use the contact link above.
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