top of page

A world first

When is a rare condition like Superficial Siderosis not so rare? When four people who live with it get together. 

The four boys_edited_edited.jpg

One of the biggest problems people with Superficial Siderosis face is meeting others with the same diagnosis. It’s frustrating for carers and families too


- so being able to catch up now and again is priceless.


Every year, the Silent Bleed team get together to celebrate our charity registration anniversary but the date also falls around the birthday of our members, Paul. We were delighted this year that Roy and Barbara were able to join us from central England and Tommi from the other side of London. It meant we could photograph this line-up. A world first we believe.


It was also an invaluable opportunity for everyone to relax, mingle and catch up. We’ll definitely be doing it again, so please keep checking in with our Facebook pages to find out more. Many thanks to Janice for your hard work.


If you’re not near enough to London to join in, why not organise a meet of your own? Whether you’re in the north of the UK or in the south of the US, we’ll provide any help, support and publicity you need to help get a few people together. Wristbands, leaflets, space on the website, promotion on the Facebook page – you tell us what you need and we’ll do what we can. Opening up about such a serious and life-changing condition is never easy but it becomes a little less difficult when you’re amongst friends who understand.


bottom of page