My son, 13, is taking part in a 1-2 year long study where they’re mapping him from diagnosis to treatment to hopefully remission. Studying his genetics, his food maps, labs, scopes and treatment protocols to try and figure out why some medications fail for some and work for others and how his genetics and diet play a role in everything. The research center he’s participating with is actually also mapping the genetics, diet and environmental links of a lot of major diseases, already following a group of new borns for their entire childhood and planning to eventually learn how to diagnose and reprogram these genes at birth and totally prevent kids from suffering at all from any major auto immune or other genetically linked disease or disorder. My son thinks it’s so cool he may get to be apart of maybe finding a preventative measure that keeps other kids, like maybe his own future kids, from going through what he’s dealing with. I just think of what I’ve read about what people diagnosed 20 years ago went through vs now and imagine when my son is a grown man how much things will have hopefully progressed for the better.
12
u/antimodez
While I'm excited it's also important to call out that things like CAR-T, let alone CAR-T without conditioning, are still at the early case report stage where we don't really know why certain one works but many others fail. I see people post random journal articles about mouse studies or a case report and not really understand how rarely these actually turn out successful later stage trials. They have just begun phase 1 trials so we're still in the extremely early stages here with not knowing how durable the response would be if you even get a response.
Personally I'm more excited about the TL1A drugs. Those show a lot of promise. There's also a new singular biologic that targets both TNF-alpha and IL-23 (bispecific antibody) that's been able to be made into a pill. That's pretty exciting obviously as no more needles plus it could serve an unmet need of people who don't get full responses to the exciting TNF-Alphas or IL-23s and are having to combine two biologics.
EDIT: Not sure why OP is getting down votes in the comments. While I maybe more skeptical of some of the treatments, especially when you start tossing cure around, we should all be working together to stay optimistic and hopeful for the future yet grounded. Down voting someone for their optimism doesn't help that in my opinion and makes us seem like a bunch of grumps...
11
u/arlo78z
Love the optimism!
3
u/Intelligent_Web3887
Track down the top researchers in this field and learn as much as you can. We all need to work together to figure stuff out and spread good information
3
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