Fredericksburg, Texas (United States)
SHANNON HASTINGS
Scleroderma Stories Issue 2
Shannon is the founder of Camp Diasozo
Shannon founded Camp Diasozo, a unique camp working to enrich the lives of children with morphea and scleroderma and their families by offering a retreat-like environment for them to enjoy.
Camp Diasozo is located in the county of Fredericksburg, Texas. The camp gives the children a place where they can make new friends that they can learn from and share with, a place for their families and others who struggle with the same health and social issues, and most of all – a place where they belong.
Could you please tell us about yourself?
I’m 22, I live in Fredericksburg TX, I’m married, and have an 11 month old baby boy.
I don’t really have a lot of hobbies or anything like that, but I love my therapy animals, homeschooling my nephews, reaching out with Camp Diasozo, and Jesus. Family is very important to me.
What led to your scleroderma diagnosis?
My pediatrician sent me to a dermatologist when I was 4 to get a birthmark looked at (it was completely unrelated and went away soon after). The dermatologist saw a patch of morphea, and it took 4 more years of biopsies, blood tests, scans, and doctors to finally get the ‘localized scleroderma’ diagnosis. My physical symptoms included arthritis, asthma, Raynaud’s, vascular issues, and the ever present sight of morphea.
Even though I was so young, it’s safe to say that I thought I was going to die from this horrible disease basically my whole life. It’s such a rare disease, and it took so long for me to meet anyone else with it that it seemed like such a scary lonely monster.
At this point in my life and several diagnoses later, I know that, as awful as a disease this is, it is part of who I am and has shaped me. I wouldn’t have it any other way.
When did you first meet someone else with scleroderma?
I was 15, and they were a camp counselor at a camp. I was at a neighboring camp, and someone introduced us, but we only briefly met. After that, I went to the scleroderma conference, and that was absolutely amazing. I had never felt so at home with so many people before that I spent most of the weekend crying.
When and how did you come up with the idea for Camp Diasozo?
When I was 12, I had to temporarily move to Dallas with my mom for six weeks to do some UVA1 phototherapy. Driving back from the appointment to the hotel one day, it just came to me like a vision so completely out of the blue. I just felt so ostracized from everyone I knew, and I don’t want anyone else to feel that alone or different either.
My dad has such a heart for it and hopes he can quit his career to run Camp Diasozo one day.
Do you have any advice for other children/young adults with scleroderma?
That no matter what, you’re not alone and you are more than your disease. Embrace having scleroderma and be stronger because of it. Don’t let this make you weak.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us
