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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.

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