Howdy everyone! I (29F) have always had issues with my health from a persistent cough to staying sick for longer than my family members. I had to go to an oncologist multiple times in childhood from bouts of swelling to rashes all over my body with different blood counts being off but never getting a conclusive answer. I started getting sicker after catching mono and covid back to back in 2022, I masked still at the time but my sister who went to bars and things did not. I was tossed between varying doctors, and I ended up eventually having my gallbladder removed in sep of 2024. Ever since that surgery I have struggled to breathe in episodes that were first seen as anaphylactic or mast cell related but did not respond to any treatments. Mid 2025 my doctor ran a genetic panel and found I have a PLG gene variant associated with plasminogen deficiency and hereditary angioedema. I have been taking treatment for the hereditary angioedema since January of this year and it just feels like marginally improved. I stumbled upon the PLGD foundation and feel that this illness may fit what I have going on. How do I go about bringing this up to doctors? Is it best to ask to see hematology or am I able to see if my doctor can test for it further beyond the gene? Has anyone dealt with this and had any success in treatment? Thanks!
Edited a typo!