The Power of Community

We're proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel.

Fear is a powerful emotion. Anxiety shows no sympathy. Fear destroys if you give it power. A rare disease diagnosis, especially one as unknown as Superficial Siderosis, forces you to face your worst fears. It’s hard. We are not built to face fear alone. Thankfully, early patients and caregivers sparked the creation of our most powerful resource. Community.

Your future has changed so how should you plan? How is your family going to be affected? Where should you look for care?. Chronic illness brings countless unanswered questions. The very nature of superficial siderosis or any rare disease should make finding your community a priority. One person may struggle to search for answers, but there is an astounding well of knowledge waiting for your questions. The wisdom of community is powerful. You’ll find your community happy to offer support no matter if you're facing a new medical procedure, fighting through pain, dealing with a new symptom or need a safe place to vent. The power of community support can make you a warrior. Being outgoing and vocal is not for everyone. Some members prefer to remain quietly in the background content to observe. That’s ok. A community has the power to be inclusive of all members. Community has the power to effect change. Change in yourself. Change in others. Becoming a rare disease advocate was something I never imagined. Ever. I still wonder at how far outside my comfort zone I’ve wandered. Embrace this change. A community has the power to make you believe in yourself. Ideas, suggestions, and research now have a place to be shared. Public and physician education becomes a common goal. Charities and non-profits form, all with a singular purpose. Discover a way to slow down or stop this life stealing neurodegenerative disorder in its tracks. A community has the power to believe; together you can become a force for change. The importance of community is to believe in the power of community.

Find Rori's powerful, insightful and informative blog, Living with Superficial Siderosis here.

Featured Posts
Recent Posts
Search By Tags
Follow Us
  • Facebook Classic
  • Twitter Classic
  • Google Classic
Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

  • Facebook Social Icon

(c) The Silent Bleed 2019

Registered as a Charity in England and Wales since 2016

Text reproduction and sharing


The reason we exist is to make our voices heard about superficial siderosis, so please feel free use the text on this site as you need to - all we ask is that you clearly mention us as the source and that you drop us a donation. Please ask permission to use photographs because many of them feature our members and it's only fair to ask them first. Many thanks.