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Feb. 12, 2021

TOPIC: Patient Stories, Rare Disease Day

Amy’s Story in Honor of Rare Disease Day

Posted by Valaree DonFrancesco

I am a patient who has lived with systemic scleroderma for over nineteen years, having been diagnosed as a teenager. 

Rare Disease Day is a day when I get to feel like I am making a difference by telling my story and educating the world about how this disease has changed my entire life. For the bad and the good. This day also allows me to educate not only regular people, but clinicians, researchers and other patients. To let them know exactly what scleroderma is and how important it is to develop treatments and hopefully a cure. 

We may be challenged by our disease, but we are not defined by itHealth equity to me means the willingness and opportunity for patients to be treated the same, no matter what disease they have. It means equity in terms of socially, politically, medically, financially, and lastly in terms of grant selectionresearch and treatment development. 

I show my stripes every day because it is my life and I want people to know that it is difficult and different, but also beautiful and amazing. On Rare Disease Day I will continue to show my stripes by posting my journey on my social media accounts and by being proud of who I am inside and out. I will show my stripes by living my life to the fullest with courage, honor and integrity.