My Voice: Hannah Weber
Friday, September 19, 2014
By: Hannah Weber

Voice Magazine, Fall 2014

My name is Hannah. I am 13 years old and was diagnosed with systemic scleroderma and Raynaud's at age 5. My mom says that when I was diagnosed, it was really hard to find information about the disease, especially juvenile scleroderma.

When I was 8, we found out there was a patient conference every year for people with scleroderma. That year, it was held in St. Louis, which is my hometown, so my Mom and Dad and I went. I don’t remember much about the conference other than the ice cream social the Murray family held and the big banquet. I won a big basket of prizes in one of the raffles. It had a lot of gift cards in it! They took a picture of me, and it ended up on the cover of the national magazine! I was a “cover girl” and loved showing it to my family and friends.

My mom said that to get more information and resources, she attended the workshops for adults at the St. Louis conference. At that time, that is all that they had. She learned a lot but said it was overwhelming. Other than Samantha Murray and her family, we didn’t meet any kids with the disease that year.

St. Louis was our first conference, and we have been able to attend every annual patient conference ever since: Boston, San Francisco, Dallas, Atlanta and Anaheim. Each year, we fill out the evaluation form with ideas and suggestions. We have seen a lot of our suggestions come true, and that means a lot more things for the kid patients to do each year.

The Dallas conference was the first conference I remember that had a whole set of activities just for the patients who are kids and any other kids that attended. Dallas was my favorite conference so far since we were able to decorate owl cakes and do improv comedy with the other kids who attended.

Every year we go since Dallas, there are more kids. It’s not always the same kids every year since it can be far for a lot of families to travel. For us, sometimes our whole family goes, and sometimes it's just my mom and sister and I. My sister, Helena, gets to go to the kids programs with me, and she really likes it, too. My mom still goes to the informational sessions. Then, she and I talk later about what she learned. After learning more information at the conferences, we always have a long list of things to ask at our next visit to the doctor!

Overall, I like to go to the Scleroderma Foundation’s conferences because I get to be around people who have scleroderma, too.