My aunt had the same disease you mention and was on medications since the 90s. She lead a healthy life with no real side effects from her medication and she passed away last year in her 80s. To be perfectly honest, she did die of the disease, because her medication stopped working and her bone marrow was all scarred. But up until a year before she passed away she was very active and healthy. Once the medication stopped working, she went steadily downhill until she passed away.

Hopefully you get great progress on your research but I just wanted to reassure you that the name sounds scary but the current treatment appears to work well and hopefully gives you enough runway to find your cure.

Incredible story, just pure resourcefulness and grit in following this through. I know it sucks to have this disease, but kudos for how you approached this.

wow, very interesting I can't say I've really ever heard of anyone financing research themselves, hope things work out and maybe a treatment arrives in time for you.

As an aside if you end up cryogenically freezing yourself for a future treatment don't forget to actually cure your boneitis when they thaw you out.

"When have you most successfully hacked a non-computer system to your advantage?" Amazing resourcefulness, you should consider applying to YC if you haven't! And I hope you manage to find a solution to your problem it sounds very promising.