6 hours ago
CLC MEMBER FEATURE: Hey everyone!! My name is Katie, I’m 20 years old & I’m from the U.S.! 21 months ago my whole life fell apart - but now I realize that it was starting to fall apart way before then. I never thought of myself as a ‘sick kid’ or ‘chronically ill’ & to some degree I still don’t think that - I just think of myself as Katie, a normal girl who happens to get sick more often/more severely.
When I was 10 I was hospitalized for a week & diagnosed with PANDAS (pediatric autoimmune neuropsychiatric disorder associated with strep throat @pandasnetworkofficial ). Basically, when I get strep throat my immune system gets confused & instead of attacking the strep germs it attacks my brain & causes inflammation (like AE.. watch ‘Brain on Fire’ :). It attacks a specific part of the brain called the basal ganglia which is responsible for motor functions & emotions. So when this part of the brain suddenly becomes inflamed it causes an onset of psychiatric symptoms like OCD, anxiety, depression, etc. & can cause tics. My PANDAS eventually turned into PANS, meaning now it’s not only triggered by strep, but any illness.
For the next 8 years, it was manageable. when I got sick, I was just sick for longer & had it harder - we called it flares. But ‘flare’ took on a whole new meaning when I got sick with lyme disease 21 months ago. It started with a seizure & then turned into ambulance rides, hospital stays, spinal taps, MRIs, CTs, EEGs, EKGs, appts, lab work & almost 2 years of pure hell. But since getting my picc line in January, I’ve slowly started feeling like healthy Katie again & can’t wait to reach remission.
It’s not easy - lyme or PANDAS. But knowing that I’ve already faced some of my toughest battles brings me peace. I’ve learned so much & gotten stronger. I know that the rest of my life will consist of ‘flares’ to some degree, but that will only make me appreciate the healthy moments more. I will love hard, wonder endlessly & laugh often. Chronic illnesses are awful, but I hope in some way you will all find peace in these wars 💛