I work one day a week with the very bouncy Jason Roberts (an old friend of mine) and a small team of bodies who keep the charity The Silent Bleed afloat.
We have much fun but the charity work itself is serious. The website seeks to inform and support suffers of Superficial Siderosis and their carers, families and physicians. It is a rare neurological condition that can arise after several bleeds on the brain, causing dizziness, bad balance, loss of hearing and cognitive problems amongst other symptoms but it is eventually terminal.
The good news is that within the last decade or so, diagnosis of the condition has become easier (with better knowledge, tests and technology) and there is an experimental drug, Deferirprone, which has become more widely used in recent years. Trials are still inconclusive but many patients are noting an improvement or at least no worsening in their condition.
- Encourage people to network through our Facebook page. This has proved invaluable for sifting through symptoms and suggesting coping strategies.
- Provide an information bank through the website. The world authority on the condition (the very helpful Dr Levy at Johns Hopkins, Baltimore) has just started a question-and-answer feature. This is an invaluable service.
- Support sufferers in getting the right treatment. Each country has its own challenges with regard to obtaining a deferiprone prescription so we try to help where we can.
We’re a small charity but we’re growing. Great things are happening this year – keep looking out for updates.
And then there’s my 5k charity run in October 2015…more details to follow about that too.
Find more information at thesilentbleed.co.uk