For Adults with PANS or PANDAS
PANS or PANDAS as an Adult
Whether you are an adult who first experienced onset of PANS and PANDAS as an adult, or someone for whom symptoms of PANS and PANDAS began in childhood and have persisted into adulthood, we know that access to diagnosis and treatment is extremely challenging in the UK at present.
We are ensuring that adults with PANS and PANDAS are firmly on the agenda in all our conversations with policymakers as we continue to champion improved healthcare for everyone affected by the conditions. We know that this process will take time, however we are working hard to push for positive change.
Whilst we work to develop our resources for you, you might find some of the information found here helpful.
Our Partner: EXPAND
Unfortunately, diagnosis and treatment for PANS and PANDAS remain challenging in the UK, particularly for adults. This is something we are approaching as a charity by increasing governmental awareness and working to co-produce NHS guidelines. While we are working on producing adult-specific resources, support for adults is available via our partner organisation, EXPAND.
This informal alliance of European patient advocacy organisations came together in 2018 to respond with one voice to a medical journal article concerning PANS/PANDAS treatment. In the ensuing months, they continued to discuss their challenges seeking appropriate treatment and expanding their understanding of this crippling disease.
EXPANDs’ resources for affected adults include:
- Information about adult patient categories
- International Facebook support group
- Advocacy organisations
- Webinars
- Research journal articles
- Articles and blogs about adult experiences
Support for Families
If you are concerned that your family member may have PANS and PANDAS, or if they have a diagnosis already, we can help.
