Friday, December 29, 2017

Let's Help Make a Difference in 2018

        As 2017 comes to an end, lets reflect back on how having a rare disease has impacted your life and your families' life. Having a rare disease is a journey that we 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, 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. There are some families who had no idea they lived in the same state and were able to meet someone with their condition as well.

                                         See the source image

        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. Sure its been difficult, but it's the story that got me here and the reason I am who I am. Being a rare disease parent opens you up to a whole other world you never imagined being part of. 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.

                           See the source image

              One person can try and make a difference, but together we can move mountains! Raising awareness and advocating is simply rewarding. You can make a difference within your own state. Reach out to you 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 share to make aware. Design your own t-shirt to wear around town to have your condition recognized.

       Some conditions like Blount's Disease currently have no supporting organization so it is up to us to bring even more awareness to the table. There are so many ideas you can do to help your condition be recognized. 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 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 us to stay strong for them too.

Happy New Year Rare Warriors, 

Blount's Disease Strong


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