Scroll
To Top

Feb. 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Removing the Obstacles: Steven’s Rare Disease Day Story

Posted by Julie Ostroff

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 played upon my life is the learning curve I’ve had in injury detection and self-preservation that comes automatically to others. Eventually I was able to learn, but it came at a steep price.

Rare Disease Day is important to me because it gives an opportunity for those who live with or are impacted by someone with a rare disease the opportunity to share their story. There’s nothing stopping us from sharing our story at any other time of the year, but this is a special day that puts a spotlight on those who are affected.

If you’re sincerely inquisitive about rare diseases, don’t be afraid to ask questions by reaching out to someone living with a condition and speaking with them directly. There may be information online that could give you a glimpse into the clinical nature of a condition, but there’s so much more to learn about by listening to someone who is living with it.

Health equity, this year’s Rare Disease Day theme, is a topic that I explore quite frequently in my personal and professional life working in the healthcare industry. As a Native American living with a rare disease, I’ve faced my share of obstacles in obtaining adequate healthcare throughout my life. And as a healthcare professional, I’ve worked hard to remove those obstacles for the patients and clients within our community. I believe one of the biggest challenges people with a diagnosis can face is the feeling of isolation. Forming communities and finding communities for people who live with something that makes them feel so alone and isolated is something that has brought me a sense of purpose. It’s my small contribution towards eliminating an obstacle and providing a little health equity to the world.