ASPIRE Blog

Pol-Fuster J., Fernández de la Cruz L., Beucke J., Hesselmark E., Crowley J.J., de Schipper E., Brikell I., Chang Z., D’Onofrio B.M., Larsson H., Lichtenstein P., Kuja-Halkola, R. & Mataix-Cols […]

The battle with PANDAS is no joke, but there is hope. Throughout my journey, my mantra has been Never Ever Give Up. I am a fighter, a warrior, like all those with PANS/PANDAS. I have found fun ways to help me throughout my journey. For every infusion, I decorate my infusion center room with yellow butterflies, my port and IV, stuffed animals, and a wreath I made after one of my surgeries. I also wear one of my Brave Gowns and bring things to paint as well. I have also learned that you can revamp IVIG bottles into painted masterpieces or sculptures, which has been really fun, too.

When my daughter was young, she washed her hands a lot. We might have poked what we thought was gentle fun at her, saying she was “a little bit OCD”. Later, she began to disclose “bad thoughts”, which I assumed were the typical products of a child’s imagination. I told her we all had thoughts like that, and if we ignored them, they went away.

Bleibach A, Sørensen CB, Skov L, Christensen KB, Debes NM. Reliability and validity of a newly developed PANDAS/PANS questionnaire. Eur J Paediatr Neurol. 2024 Sep;52:109-130. doi: 10.1016/j.ejpn.2024.07.008. Epub 2024 Jul […]

Elise shared the story below on her PANS/PANDAS journey at the IOCDF Conference in 2024 as part of the panel “PANS & PANDAS: What is it, What to Look For, […]

Lyla is a spunky eight-year-old little girl with a wild imagination. Along with her best friend, Pickles, Lyla loves to go on adventures, play pretend, and enjoy being a kid. When Lyla was six years old, she was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections). Throughout this story, Lyla and Pickles hope to uplift other PANDAS warriors while educating others on PANDAS.

Leonardi L, Perna C, Bernabei I, Fiore M, Ma M, Frankovich J, Tarani L, Spalice A. Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections […]

Pooni R, Zheng W, Ma M, Silverman M, Xie Y, Farhadian B, Thienemann M, Mellins E, Frankovich J. Cerebrospinal fluid characteristics of patients presenting for evaluation of pediatric acute-neuropsychiatric syndrome. […]

The disease is typically as awful as it is sudden: Over a few days, children develop severe anxiety and intense obsessive-compulsive behaviors. They barely sleep and may stop eating. Their schoolwork suffers. They can become clumsy or develop tics. Although they’ve usually been toilet-trained for years, they may start to wet their beds.

Share this one-page handout on PANS PANDAS. Click the button below to download the 1-page handout on PANS PANDAS, including symptoms and information about the disorder. Register with ASPIRE to […]

  Straight from the Heart: Students and Young Adults Share About PANS PANDAS Download PDF version: What I Want My Friends to Know About PANS PANDAS ASPIRE surveyed students and […]

Recent PANS/PANDAS Triumphs Thank you to everyone who took a moment to celebrate your recent success. Your stories provide hope to other families and patients! Would you like to share […]