Seeking help

Hello everyone, I am a 24 year old girl from Lucan, Dublin. I am currently battling a rare autoimmune condition called HLH. HLH stands for hemophagocytic lymphohystiocytosis. It is a life threatening condition. Mine is EBV induced just for additional context. Doctors in Beaumont haemotology department say the last time they came across this condition was about 4 years ago. When speaking to me and explaining it more, a doctor even said "it is not cancer but it is on par with cancer". I have had to give up a job I was supposed to start at the beginning of July. My mother has also been unable to return to work as she has had to become my full time carer. She is all I have in terms of help. We already had very significant financial issues before this so this does not help at all. Some of my symptoms include speech and walking issues/neurological issues. This website summarizes things very well if you are interested in symptoms and treatment etc. https://www.cincinnatichildrens.org/service/h/hlh/about#:~:text=HLH%20stands%20for%20hemophagocytic%20lymphohistiocytosis,when%20the%20condition%20is%20inherited.