PNA Patient Hero: Sunny Ammerman
Editor’s note: From time to time, the PNA likes to feature people we consider to be “PNA Heroes”. This month we are lucky that one of them, Sunny Ammerman, has agreed to tell us her story.
My name is Sunshine Ammerman, but everyone calls me "Sunny",
I was born with a rare condition called “septo-optic dysplasia” (SOD). This complicated birth defect caused a trickle-down effect leading to other rare diseases such as optic nerve hypoplasia and panhypopituitarism. My pituitary gland doesn’t produce enough of the hormones necessary for survival, making lifelong treatment a necessity. While it is more common now for infants to receive this diagnosis at birth thanks to the implementation and expansion of newborn screening, I was not diagnosed until I was 13 years old, when my parents noticed I was not starting puberty. I was lucky to be connected with a very talented endocrinologist who was able to give me the correct diagnosis right away. Subsequent testing proved his suspicions were correct, and I began my treatment journey.
Other than the basics such as what medications I had to take in order to stay alive, my parents weren’t provided with proper educational resources on my conditions, and as a result I grew up without adequate care, and we lacked knowledge about my own rare diseases. I was absolutely ignorant of how rare and complex my conditions really are until I moved out on my own and had to take charge of my healthcare.
This is when I really started digging for more information. At the time, there weren’t many educational tools on my conditions outside of medical journals filled with confusing and complicated jargon that I had to work very hard to understand. At first, I couldn’t find any patient advocates for my condition outside of the small, private support groups I joined online. I saw a real need for accessible, easy-to-understand, empathetic patient stories from people who have my conditions. That’s when I decided to start recording vlog-style videos offering insight into what it’s like to live with them.
As I learned more and became very well-versed in the facts of my own diagnoses, I created my first presentation-style video simplifying those medical journals and laying out all the details of panhypopituitarism. I called that video “Panhypopituitarism 101”, and it was the only one of its kind on YouTube for quite some time. This led to many comments from people thanking me for making it, telling me that the way I clearly explained this condition helped their loved ones understand it better. This outpouring of support inspired me to do more to help raise awareness, and I started getting involved in more advocacy work for my conditions in the form of continued videos and eventually my own blog which served as a way for me to reach out to the broader chronic illness community, while also teaching people more about my specific rare diseases. It allowed me a therapeutic outlet while I went through some difficult life experiences related to complications from my conditions.
The Pituitary Network Association was a valuable resource for me all along the way, and I am really happy that I get to pitch in and give a little back to them by volunteering as an advocate and resource on their website! I also volunteer for the National Organization for Rare Disorders (NORD) as their Rare Action Network (RAN) Community Engagement Liaison for the state of Indiana. That is where I focus the bulk of my efforts as an advocate, furthering advancement for the rare disease community as a whole with a focus on legislation that directly impacts rare patients and their families. Residents of my state are encouraged to reach out to me at [email protected] if you are interested in learning more about how YOU can become a rare disease advocate and get involved with RAN as well!
My blog: https://insomniadoodles.com/
People can reach me by filling out this contact form on my website, and I will respond via email:
Email for NORD / RAN inquiries only: [email protected]