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evilbadgrades1 karma

Wow, my condolences. What sort of pain medications do you currently take?

Have you considered cannabis to ease the pain? I work with many medical patients who have switched from taking horrendous pain pills daily to vaporizing CBD rich herbs to ease the pain and provide sedation (while skipping all those nasty side-effects of the prescription medications)

Moreover, have you considered reaching out to IBM's Watson program? They have been working on methods of applying the Watson AI to cure rare genetic diseases like yours.

Never give up hope! Medical technology is advancing at a rapid rate. I think things are going to change dramatically in the healthcare industry within the next 15-30 years