My name is Kayla Caulfield I’m 24 years old and I’m a model and actress from Waltham Massachusetts. I’m here to tell you about a rare disease that I have called PANDAS.
You may ask what is PANDAS? It may have an interesting name, but PANDAS is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep, and is a post-infectious neuroimmune disease that demands more research. It is estimated that 1 in 200 children in the US alone experience PANDAS.
I started experiencing the symptoms in the spring of 2012 at age 16. The facial and hand tics and losing a drastic amount of weight. This of course frightened and concerned my mother and everyone around me. I literally changed overnight, so did my behavior.
I’ve had numerous CT scans & EEGs, and even tried other remedies like reiki and meditation but nothing really worked. I was then admitted to children’s hospital that summer and that was when my mom did her research and came to the conclusion that I have PANDAS. She went to BCH to discuss with the doctors and said “my daughter has PANDAS”. They denied it and said that what I had wasn’t real, and that it was all anorexic-related issues. I was then discharged and had to find the proper help and care. I then found a doctor at Tufts who specialized in PANDAS and other behavioral issues, and truly understood what I was going through, and was given medication and the right treatment. I may have not been open about my journey in the beginning because I was young and I had no idea what was happening, all I knew is that I was very sick.
However, I never was sick with strep but after I was discharged my mother asked my pediatrician to run anti strep titers and they ended up being through the roof so they started me on antibiotics.
I now also realize the impact it has on myself and others who are still trying to find the right answers and spread awareness. Today, I continue to share my story with you all, and one day to the world, so that no child, parent or young adult will not go through this fight alone, and we all have been seen and heard and recognized.
PANDAS/PANS awareness day is on October 9th. And just last year in 2020, Massachusetts Senate Passed a Bill to Require Insurance Coverage for Children with PANS/PANDAS, but there is still work to be done for all affected around the state, around the country, and around the world.
Every day, not only do I fight for myself, but for others who have been ignored or wrongfully treated by “medical professionals”.
I’ll always have my mom to advocate for me like she did in the very beginning of my journey, but now as a young adult, I have to learn how to advocate for myself. I’m always thankful for my mother for doing her research and outsmart the doctors who denied the truth.
Advocate for yourself when others are telling you differently…
If you are a parent, or know a parent of a child with PANDAS, you are not alone. You have a voice, you matter, and a parents intuition is always right.
I encourage all of you to wear, or show off a little bit of green every year on October 9th, or on any day, for your support of every child or parent going through the nightmare that I went through.
Find ways to spread the word.
I hope that, eventually, no more lives will be lost, no more generations of family devastated.
The fight isn’t over.
For more information on PANDAS/PANS or to make a donation to help battle this disease please visit PANDASNetwork.org.
Kayla Caulfield is a model and actress. When she isn’t working on a movie set she is also a children’s entertainer/princess for birthday parties. You can follow her Instagram page @kay_caulfield and find her acting work on IMDb.