Why This Is Our Most Powerful Resource as People Facing Rare Disease

Fear is a powerful emotion.

Fear destroys if you give it power. Anxiety shows no sympathy. A rare disease diagnosis forces you to face your worst fears.

It’s hard. We are not built to face fear alone. Thankfully, fellow 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 (SS) and every rare disease 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, battling a new symptom or simply need a safe place to vent.

The power of community support can make you a warrior. A community has the power to affect change. Change in yourself. Change in others. Becoming a rare disease advocate was something I never imagined.

I still wonder at how far outside my comfort zone I’ve wandered. Embrace this change, because together you can become a force for change for yourself and others.

Being outgoing and vocal is not for everyone. Some members will prefer to remain quietly in the background content to observe. That’s OK.

When you feel alone, a community has the power to be inclusive and welcome all of its members.

Your community has the power to help you believe in yourself, so embrace the strength that is created when people with rare diseases join together.