The story of Sunny
I was born with a rare birth defect called Septo-Optic Dysplasia. In order to get this diagnosis, you need to have two of three indicators; Malformations of the pituitary gland, optic nerve, or midline of the brain. I have all three indicators! I am missing the Septum Pellucidum, a thin membrane in the midline of the brain, my optic nerve is malformed, causing bitemporal hemianopsia (blindness in peripherals), and my pituitary gland was also underdeveloped. Because of this, I have Panhypopituitarism, which basically means my pituitary gland doesn’t secrete most pituitary hormones, which are necessary for a myriad of bodily functions. There is treatment, fortunately, but it isn’t a cure, and it’s not perfect. I have to replace all my missing hormones with a bunch of synthetic hormones in the form of pills several times a day and a nightly injection, so I’m basically acting as my own pituitary gland. I still deal with debilitating symptoms from time to time as a result of hormonal imbalances and other complications of my condition. I also have a pretty weak immune system, so I get sick pretty easily and deal with upper respiratory infections just about every year.
I was diagnosed when I was around 12 years old when it was becoming clear that I wasn’t developing like my peers. I was very small and pretty frail, and puberty just wasn’t happening. We went to Riley Children’s Hospital in Indianapolis and I was lucky enough to be seen by an incredible endocrinologist who suspected my rare disease diagnosis as soon as he noticed my twitching eyes and stunted development. He called for the appropriate tests, and his suspicions were confirmed. I had to undergo a few tests to get the diagnosis, which were pretty intense, especially for a kid my age. I had to do a “stimulation test”, which included sitting for HOURS hooked up to an IV where I was loaded up with stuff that stimulates the pituitary gland to do different things, which showed that my pituitary gland was not functioning as it should. I also had an MRI and a litany of bloodwork. After all was said and done, I had the diagnosis and was able to start treatment right away, which included a NUMBER of injections. Little kid me was NOT happy about that, but I got through it, and it saved my life. Without treatment, my condition can easily be fatal. I am grateful for all of the incredible help I received from Riley, and I am so lucky that I still get to see the very endocrinologist who first diagnosed me as a kid!
Due to the frequently debilitating nature of my condition, I am already on Disability at the age of 32, but I don’t mind it too much. It gives me a lot of free time to do things I am passionate about, like raising awareness for my condition as well as other rare diseases, and invisible disabilities / chronic illness in general. I have a ton of hobbies I enjoy as well, like art, sewing, playing video games, and gardening, among many, many others. I also keep a blog and host a weekly support group in the Metaverse for VR enthusiasts who are living with chronic illnesses / invisible disabilities.