"I want every single kid, every single teen, every single young adult, every single adult with PANS/PANDAS to realise what they are capable of because they are capable of so much more than their disorder gives them the notion of..."

One of my favourite episodes ever. So pleased to talk to Kirk Lord on the podcast. He first got PANDAS aged 4 or 5, recovered only to get it again in his late teens. This has not deterred him from living his best life. He talks of a growth mindset and gaining grit and resilience from battling the illness, and how "if you think PP is limiting, think again"

He set up the National PANS/PANDAS Youth Alliance to advocate for the illness and to unite young people who have experienced or are experiencing its impact.

And he practises what he preaches - already a stellar athlete, he dreams of competing in the Olympics.

Kind, articulate, and passionate, Kirk is a fantastic rolemodel for what surviving or living with PANS/PANDAS looks like.

In this episode of PansPandas Stories, host Lucy McDonald interviews Freya Shacklock, a 19-year-old who shares her inspiring journey of recovery from PANS-PANDAS, a condition that caused her severe mental health challenges and physical symptoms from a young age.

Freya discusses the importance of family support, the challenges of navigating treatment, and the hope that comes with finding the right diagnosis. She emphasises the importance of therapy and the ongoing journey of recovery, encouraging others to hold onto hope for a brighter future.

She talks about gettig her first job with the doctor who diagnosed her, Tim Ubhi.

DISCLAIMER! I work with Dr Ubhi too, and met Freya through the clinic. Her comments about her diagnosis and treatment, are all her own, and a testament to the trust and support, she feels to those who helped her heal.

It has been a while since the last PANS PANDAS Stories and our return is marked by an interesting chat with Dr Kiki Chang. He has a long PP pedigree and now works privately in the States where he has been instrumental in treating children and advocating for the illness - both nationally and internationally.

He discussed what NOT to do in a flare, the power of therapy and working with families and, most of all, not giving up.