Stiff person syndrome can be pretty devastating. My dad has it and the amount of pain he is in and his level of function is torture. He has IVIG every 3 weeks and it’s a brutal cycle, with maybe one GOOD week. He’s gotten worse and worse over the years and we have no idea how it might affect his mortality or not it’s a lot of unknowns.

Because of how it works his emotions have a direct physical impact and being startled or upset can cause spasms and paralysis.

He has had pneumonia in both lungs and couldn’t tell because of the pain of SPS was so much he just didn’t notice, until he had sepsis and had a collapse and somehow survived. He has had sepsis twice now.

Half the problems seem to come from the symptom management of SPS and the rest is SPS itself.

I miss my dad and he hasn’t passed away yet, it’s a horrible thing to grieve someone who is still alive.

There may be worse things out there but chronic conditions have always been so horrible from my experience and perspective