Meet Nicole B.

Relationship to HPP: Region Lead for Midwest 1

Joined: March of 2023. Last summer I hosted my first Soft Bones meeting at my home. It was really nice to meet new people and share stories. 

What do you want the world to know about HPP? HPP affects everyone differently. I have 2 sisters, a nephew, and my daughter diagnosed and we all have different symptoms. Having a very open discussion listing all of your symptoms with the HPP Dr. helps them understand how to better help you. 

What motivated you to be a part of this community? I am an outgoing person that likes to meet people. Especially with a rare disease, not feeling alone helped me feel more at ease with my diagnosis. Soft Bones was welcoming since day 1!! It’s like being part of a family!

What is your favorite quote? “It takes courage to grow up and become who you really are” – E.E Cummings

What is one fun fact about yourself? I have always wanted a Llama since I was a child. My husband asked to marry me and I said “yes, but I might want a llama some day!” He said, “ok”!