Rare Is Proud
Today is Rare Disease Day! Rare by definition means “not occurring very often and not in large numbers.” And yet on this day when you bring all of the rare diseases together we are many- hundreds of millions of patients, caregivers, practitioners, families and friends. Our voices united are stronger and on this day I am always overwhelmed with a sense of pride to be a part of this community.
Rare disease life is hard. It is painful and unpredictable. It is stressful and exhausting. There is uncertainty for what our future may hold and a yearning for our past life to return. There are moments of deep sadness and grieving for what has been lost. And yet, there is unending hope. Hope for answers, hope for new diagnostic and treatment options, hope for a cure, hope for a better tomorrow. I have come to realize that this in fact must be our coping strategy - for if we do not have hope we have nothing and that is why we all keep fighting. It is this shared community of hope that keeps us all moving forward- knowing that we are not alone.
So on rare disease day this year I am celebrating my community- both the rare disease community and my own who each support me along my journey, in all moments both good and bad. Thank you to all who are a part of my journey, for your love and support always. To my fellow warriors - thank you for inspiring me daily.
Please click the link in the photo above or here to view a video I have made in honor of rare disease day as a way to raise additional awareness around my rare diseases.
Rare is many. Rare is strong. Rare is proud.
