TOPIC: Patient Stories, Rare Disease Day
From the time I was three years old, my life has centered around horses. When I was diagnosed with my rare disease, diffuse scleroderma, my first thought was “will I still be able to ride?” I was 28 years old, had the horse of my dreams, and was terrified that everything was about to change. Little did I know,… Read More
TOPIC: Patient Stories, Rare Disease Day
I am a 16-year-old pediatric patient who has been struggling with Sjögren’s for years.
There are so many ways my condition has affected my life in both bad and surprisingly good ways. On one hand, sometimes my day-to-day life can be hard. It’s difficult to be the only one of your friends who isn’t playing sports or isn’t attending… Read More
TOPIC: Patient Stories, Rare Disease Day
I am a mom, advocate, fighter and the biggest support to my two-year-old son Braxton, who was born with Phenylketonuria (PKU).
My biggest mission since my son was born was to raise awareness, far and wide, about PKU and what a life with this disease means and looks like. It has become my personal goal to get my senators… Read More
TOPIC: Patient Stories, Rare Disease Day
I was born with a rare genetic condition known as Congenital Insensitivity to Pain (CIP), which leaves an individual unable to sense physical pain. This “disease” or condition, as I prefer to call it, has impacted my life in a multitude of ways that are not always easy for me to identify. I believe the biggest impact it has… Read More
TOPIC: Patients & Members, Patient Stories, Rare Disease Day
Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew something was wrong, but it took 21 extremely long months of back-to-back testing to simply give that “thing” a name. Merely to define his symptoms… Read More
