If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
PANDAS Syndrome
cackie
Community member Posts: 2 Listener
At the age of 36 i was diagnosed with Paediatric Autoimmune Neuropsychology Disorder Associated with Streptacoci.
Is there anyone in the same boat?
I was told it was very rare in adults. That was 13 years ago.
Is there anyone in the same boat?
I was told it was very rare in adults. That was 13 years ago.
Comments
-
Hi @cackie.
I read about PANDAS years ago when I was researching about my sons diagnosis of Autism.
Since then I’ve heard nothing about it.
Can I recommend you contact HeadWay maybe?
They’re a brain injury charity (I’m a member with my own ABI).
I’m sure they’d be able to point you in the right direction of info and support.
They may have members who have the same condition and often arrange for people to chat or meet to support each other.
Just an idea.
Hope you find people in the same boat!
I know what it’s like to have a rare condition!
Mine is ADEM, and as an adult sufferer I’m about 1 in 4 million!
Lou x -
@cackie, Hi, I have recently been reading up on PANDAS as it was mentioned in my online community for KLS. I have Kleine Levin Syndrome and there are a lot of similarities with both. Sunshinelou has given you good directions for support... Good luck x
-
Thank you im going to google KLS. Ive only just found this discussion site. It is great to realise you are not alone. X
Brightness
Categories
- All Categories
- 13.3K Start here and say hello!
- 7K Coffee lounge
- 101 Games lounge
- 483 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.6K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 807 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 666 Dating, sex, and relationships
- 374 Exercise and accessible facilities
- 845 Transport and travel
- 32K Talk about money
- 4.6K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.2K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.4K Talk about your impairment
- 1.8K Cerebral palsy
- 886 Chronic pain and pain management
- 183 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 328 Sensory impairments
- 832 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.