What I Want Rare Warriors to Remember for the New Year


As 2017 comes to an end, let’s reflect back on how having a rare disease has impacted your life and your family’s life. Having a rare disease is a journey we often don’t expect, but we manage to handle unexpected curveballs that come our way. Being part of the rare disease family can also be a blessing. Through support groups and organizations, hopefully you have realized you are not alone, and can connect with other families and patients who are going through their own battle with your condition.

In the New Year, I’d like to encourage rare disease patients to be open and tell their stories. Sharing your story makes a difference. I don’t share our story for people to feel sorry for us — I share our story to encourage and inspire others. I share my story so people know they are not alone. Yes, it’s been difficult, but my story has helped shape who I am. Being a rare disease parent opens you up to a whole other world you never imagined. You learn from others and are motivated by others when you hear their stories. Don’t be ashamed of your story. It will inspire others.

I also want to remind patients and family that together, we can make a difference and move mountains. Raising awareness and advocating is rewarding. You can make a difference within your own state. Reach out to your governor and request a proclamation day for your condition within your state. Participate in Rare Disease Day by showing support for you condition or even having your child’s school participate by wearing a specific color for that day. Hashtags go a long way through social media. Share facts about your condition using hashtags and keep sharing to raise awareness. You could even design your own t-shirt to wear around town to have your condition recognized.

Some diseases like Blount’s disease currently have no support organization, so it is up to us to raise even more awareness. Let’s make a difference for the new year to come. Let’s help those families who are newly diagnosed realize that they are not alone. No matter the condition, we are all part of a “rare family” and raising awareness is the most effective way to help our community. In addition to educating the public, the more recognition your condition receives, the more attention will be placed on research. Let’s rise up for those around us who need our strength too.

Happy New Year Rare Warriors!

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