Annabel’s Story

Annabel is 17 years old from Bridgetown, Nova Scotia! She has been battling PANS since 2019, and believes that her six-year journey with autoimmune encephalitis has made her stronger, more outgoing, and willing to advocate for herself and others. She looks forward to attending college this fall (2025) and has aspirations to become a pediatric anesthesiologist!

How old were you when you first began experiencing symptoms of PANDAS or PANS, and which disorder do you have?*

I was 11 years old at the time of my onset and I have PANS Syndrome.

Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?

Getting PANS syndrome at such a formative age completely changed my life. My personality has fully changed. I don’t fully remember what I used to be like but asking people around me I know it has. I was a competitive gymnast for around 7 years when I got diagnosed, and I would do it for another two years before I eventually had to leave due to illness. I also had a severe slide in my academic ability due to the cognitive impairment caused by PANS. I do think it made me a stronger person and definitely more outgoing and willing to speak out. My symptoms have impacted me every day since I got diagnosed. The decisions I make now are based around my symptoms and how I will feel which has left me with some problems in my life. That’s why it’s so important to have people who understand you.

What is your dream job and vision for your future?

I want to be a paediatric anesthesiologist! I’ve had a lot of surgeries in my life and it’s really helped me understand what an anesthesiologist does and I think it fits me really well. I’m going to University in the fall something I never would’ve thought would’ve been possible 6 years ago and I have a really bright outlook for my future!

Were there any particular moments or experiences that made you feel understood or supported during your journey?

Yes! So when I was first diagnosed in 2019 there wasn’t a lot out there on social media yet in terms of support, However about a year and a half later, I would find people that would truly understand me. We would all talk on Instagram. We had PANS and PANDAS Instagram accounts and it was just really nice to talk to all these people and participate in the outreach! I’ve now switched to TikTok  primarily to advocate, and I’ve met some of the most incredible people on there that truly know what I’m going through.

Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?

With my PANS syndrome, we were never able to find the root cause which has caused me to be on IVIG for around six years. However, a year and a half ago I got an incredible opportunity to be able to switch from IVIG to SCIg. SCIg is a subcutaneous infusion of immunoglobulins and it’s done at home. It helped me gain control of my healthcare and feel that independence again. It completely evened out my symptoms and was the best thing that ever happened to me. I’m such a big proponent for at home healthcare and I think it is truly incredible for chronically ill people.

What’s something about yourself that you’re really proud of?  

That I was able to make it out of the worst flare of my life. I’m really proud that I’m just here and able to do what I love still because I wasn’t sure if I would ever be able to do that again.

Annabel, from everyone at the NPYA, we look forward to seeing you grow as a person as you continue to advocate and and chase your dreams. You are loved 💚