That's the response I get when presenting my medical history for the first time to doctors. When I share with the non-medical community, the response often changes to something like "Wow, that really sucks, I'm sorry" or "You're so strong", etc. To be honest, I've made peace with the fact that I can't control how people react to my medical journey. But as you read through this brief summary/intro, please take a moment to reflect on YOUR initial reaction is to this information. Do you feel….
Sorrow for the author?
Terrified of the medical unknown?
Thankful for your own health?
Curious and eager to learn more?
Shocked as you've never experienced someone with these issues?
Guilt for not appreciating your health more?
Validated as you share a similar experience?
Unconvinced these medical issues are actually "real"?
Whatever you're reaction is, just know that your feelings are VALID. All I ask is that if you're unfamiliar with something, try to learn more about it. Ask questions, read medical articles, listen to patient testimonials, whatever just try to keep an open-mind (if you can). :)
I'll share many anecdotes, stories, and facts throughout this blog but for this introduction I'll keep it short and sweet while still providing you with excellent medical resources to learn more. Now, ascending to the stage - the chronic illness quartet of Stem Sadie! *claps from the audience*
P.A.N.D.A.S. stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep - a phrase I've had memorized since I was 7 years old. One night, 5 year-old Sadie went to bed completely normal and woke up in the morning a totally different child - anxiety riddled, critically ill, on-the-spectrum, and immunocompromised. Diagnosed years later, my family learned that I had contracted strep - totally normal for a child, right? - but in this rare case, the strep traveled to my brain and launched an attacked causing permanent damage. This resulted in many mental health issues including ADHD, OCD, Tourette's/tics, depression, anxiety, number dyslexia, issues reading social cues, insomnia, suicidal thoughts, and being put on the autism spectrum. Some of these neurodivergent qualities plague me to this day, but I've worked hard to thrive in this life with them and to eliminate others. Now an adult, I'm considered very high functioning and am a very vocal advocate for PANDAS awareness. As one of the very first cohorts, I participated in clinical trials and struggled with the lack of medical knowledge and acceptance by the medical community. Over the past two decades, amazing medical strides have been made in identifying and treating children with PANDAS - but what about the PANDAS that grew up into adults? There's VERY little research being conducted on PANDAS adults so the future struggles with this disease are unknown - well, that's terrifying…
Idiopathic Hereditary Angioedema & Urticaria (H.A.E.) has plagued me since I was a teen, and yet it was only a handful of years ago that I was properly diagnosed. Not only is H.A.E. rare in itself - since I apparently do everything to the extreme lol - I also happen to fall into a rare subset of H.A.E. patients, the one with the most unknowns of course. In summary, sometimes my body creates too many "histamines" which cause any area of soft tissue (arms, legs, hands, colon, face, throat, etc.) to swell. The most extreme case of an angioedema flair, and the one people think of the most, is when your throat completely closes - anaphylaxis. In addition to swelling, I have bouts of painful, welt-like rashes (urticaria) that pop up all over my body. To be honest, this diagnosis is relatively new for me so there's a lot that my doctors and I don't know. My case is also complicated by the "idiopathic" part, which means no clear cause for the disease. Throw in my other rare autoimmune issues and it's like solving a huge puzzle with all the pieces upside-down.
Another recent diagnosis, Primary Biliary Cholangitis (P.B.C.) is an autoimmune disease which slowly attacks the patient's liver, leading to cirrhosis. Sounds scary right? Well, what's even scarier is top doctors in their fields saying "We can't say 100% that you have this disease, but you probably do and are just in the early stage where we can't do anything about it so let's just monitor your liver every couple months and treat it when it gets worse." Since I may or may not (but probably) have PBC, I don't spend much of my time devoted to this one.
Functional Neurological Disorder (FND), the one non-autoimmune disorder was finally diagnosed only a handful of months ago. While the diagnosis is fresh, it also explains MANY severe, seemingly random symptoms throughout my entire life - seizures, sudden inability to walk, brain fog, severe pain untouched by medications, hand tremors, and more. While not autoimmune, it follows my rare illness pattern in that it's only recently been accepted/researched by the medical community for the last 10 years. Additionally, like PANDAS, some doctors to this day still don't believe the disease exists. Basically, my brain's "hardware" is working properly but sometimes the "software programs" don't always work properly (ex. walking.py, go_down_stairs.c). I recently started a new treatment program where the goal is to "retrain my brain" and uses virtual reality (VR) headsets in conjunction with a physiotherapist. There will be many FND blog posts in the near future and I'm excited to share my journey with you.
So that's a quick medical summary. There will be more stories, symptom updates, celebrations, frustrations, advocation, and education on each of these but for now, feel free to ask questions and checkout the resources I've provided.
My brain: "I guess there's no turning back now."