Long COVID Online Community

Hi I am approaching my 3 year anniversary, I have officially been diagnosed with MCAS, though my integrative doctor has suspected it for a while. I was listening to a Podcast last week that was discussing MCAS and POTS they also discussed RCCX theory, this theory discusses four key genes—C4, CYP21A2, TNXB, and RP1—the RCCX locus is notable for its high degree of variability, including copy number variations (CNVs) and modular arrangements. The RCCX theory proposes that there are structural and functional variability of the RCCX complex—a gene cluster located on chromosome 6—plays a critical role in influencing susceptibility to various diseases. I have the CYP21A2 (which can cause congential adrenal hyperplasia) gene and TNXB (which is the connective tissue hypermobility area)

Hi if theres anyone still around. I got hit by the weapon mid 22. I lost everything including my family and friends due to them just not understanding or believing. I'm very alone. I still can't believe that my children don't even talk to me anymore. I can't fathom that. I have parosmia and severe vascular issues that the surgeons say I won't survive like a collapsed aorta and vertebral artery. Walkings out thanks to my collapsed aorta. My brain isn't getting decent blood flow and my thalamus is failing. I'm also losing my ability to recognise people and things. I dont have long left and I'd truly appreciate a chat with someone whom understands this he'll those monsters left me in. I'm not schizophrenic or insane and I most certainly do NOT have a psychosis. Hearing that rubbish from medical professionals makes me sick. Anti psychotic medication will not help my symptoms of long covid. I've worked out how to eat something again which has helped a bit with the depression. I eat very cold and well overcooked food Is anybody here? Up for a chat somehow?

Hi community, if you would like to contribute to the knowledge base about this condition then consider participating in this survey that forms part of my PHD. I'm closing it in a weeks time. thanks amber, amber.conn@hdr.qut.edu.au https://qsurvey.qut.edu.au/jfe/form/SV_b1NlEOkEKgInYbA