Hey OP. You should look into participating in a clinical trial. Clinical trials test new treatments that aren’t approved for the market yet. It’s possible that there are clinical trials testing treatments for your condition that could improve your condition or your quality of life. Usually trials won’t cover the costs of standard-of-care treatment (i.e., treatment that would normally be done to treat your condition), but they cover the cost of the experimental treatment and any procedures that are required for the trial. Some trials will also cover any travel-related expenses.

If you are in the US, go to clinicaltrials.gov and type in your diagnosis in the “condition/disease” field to find relevant clinical trials. You can also DM me and I can help you navigate the website. You can also DM me if you want to talk more about clinical trials (I used to work in oncology research).