Test for Adult PANS/PANDAS
Donation protected
As many of you know, I had a very serious toxic brain injury in 2014. I lost most of my skills, including my ability to read, write, speak and count. My sensory sensitivities were magnified by 1000. I've spent the last four years trying to recover from my injury. I can now read but it's much more difficult than before. I can write--typing is easy, my handwriting is terrible. I can speak much of the time but at other times I become nonverbal. I can do basic arithmetic, but that's about it. I also developed OCD and Tourette syndrome.
I've uncovered many of the reasons for my regression, but one possibility hasn't yet been tested. I want to rule in or out whether adult PANS (pediatric acute onset neuropsychiatric syndrome) or PANDAS (pediatric acute onset neuropsychiatric syndrome associated with streptococcal infections) played a role in my regression. If I have the antibodies for PANS/PANDAS I can move forward with getting appropriate treatment. I have a family member who had a PANS episode, so that increases the likelihood that this is an aspect of what is affecting me.
When I started this campaign, I was going to have The Cunningham Panel tests performed. However, I've since learned more and am choosing to have the Cyrex Array 7x run instead, as it tests for antibodies more commonly found in adults.
I've written a book about my injury entitled "Regression." (I wasn't paid an advance). "Regression" comes out in December 2018. After my book's release, I'll write about my Cunningham panel test results and whatever treatments I've chosen to pursue. Learning this final piece will help us all know how the journey ends.
If you donate $30 or more, and email me your mailing address, I'll send you a signed copy of "Regression" when it comes out. This offer is good in the Continental U.S. only. Email [email redacted].
I've uncovered many of the reasons for my regression, but one possibility hasn't yet been tested. I want to rule in or out whether adult PANS (pediatric acute onset neuropsychiatric syndrome) or PANDAS (pediatric acute onset neuropsychiatric syndrome associated with streptococcal infections) played a role in my regression. If I have the antibodies for PANS/PANDAS I can move forward with getting appropriate treatment. I have a family member who had a PANS episode, so that increases the likelihood that this is an aspect of what is affecting me.
When I started this campaign, I was going to have The Cunningham Panel tests performed. However, I've since learned more and am choosing to have the Cyrex Array 7x run instead, as it tests for antibodies more commonly found in adults.
I've written a book about my injury entitled "Regression." (I wasn't paid an advance). "Regression" comes out in December 2018. After my book's release, I'll write about my Cunningham panel test results and whatever treatments I've chosen to pursue. Learning this final piece will help us all know how the journey ends.
If you donate $30 or more, and email me your mailing address, I'll send you a signed copy of "Regression" when it comes out. This offer is good in the Continental U.S. only. Email [email redacted].
Organizer
Twilah Hiari
Organizer
Mission, KS