These sage words of advice come from a girl with PANS/Autoimmune Encephalitis. She often allows people to ask her questions in her stories. One day a mom asked, how can I best support my daughter with AE/PANS/PANDAS? Her answers are so perfectly spot on. We are thankful that she allowed us to share her words. Please keep her in your hearts as she battles against this horrible disease; she is so brave and strong.
She sums it all up so perfectly. We can all must listen and learn from those living with this disease.
How to Best Support Someone with PANS PANDAS?
- We don’t mean what we say in anger rages. We can’t control it. If we say we hate you, we don’t.
- Remind us we are loved.
- Try to be understanding.
- Try to be forgiving.
- Don’t call us crazy.
- Remember that our brain is inflamed.
- Don’t challenge us when we are in a severe flare or anger attack.
- We can’t even think or hear what you are saying a lot of the time.
- Help advocate for us to get the right kind of help that we need, especially when we are the sickest and unable to communicate for ourselves properly.