You'll just be tired! Education for the medical society please! Pernicious Anemia is a disease! Can CRISPR-Cas9 offer cure in future for us?

[robinsnestwalke]

Most caregivers are very uneducated to the disease and brush you off as it's no big deal, and most will tell you "you're getting b12 injections monthly and all is AOK, even with alternating low red and white blood cells and numerous other levels out of range. I was first told around 2007/8 that I was deficient and needed monthly injections of b12, which I did until they told me insurance was no longer covering my coming into the office for shots and that they would teach me and I would do it myself at home. I asked the doctor what would happen if I forgot or just didn't give myself the shot, and he responded with "OH, you'll just be tired"! And I'm almost sure I went a year without shots and upon changing health organization's and them checking my levels, was told my levels were very low and the office would ok my shots. Around 2013 I finally upper/lower GI, then PH test showing 7.5 PH level, Serum Gastrin level checked, and it was and will always be, grossly elevated, as with all PA patients, because your body is trying to produce stomach acid and can't, so the Gastrin is constantly secreting, every time you eat, so I've had it explained to me. Which in and of itself increases odds of Gastrin/Stomach cancer by 3X.

I have donated my body to Medical Science, however, I'm thinking about changing that, unless they will study my body specifically for this disease, which I haven't had any luck upon searching. That shows you how much research goes into finding a cure. Maybe we need to hold out hope that the CRISPR-Cas9 gene editing program will cure this Anemia too, like it has for Sickle Cell Anemia.

I hate to say it, but there is no cure yet, b12 is only a treatment, you are not producing stomach acid with total destruction of the parietal cells and while some might find comfort in area's, there is constant damage being done, parietal cells do not regenerate and Gastrin levels will not be normal in patients with PA (and that is not a good thing,) period.

I now have no fear of giving myself the injection's, just don't like it much, and the dr won't give me a script, so I can at least give myself daily injections in an attempt to reverse the severe nerve pain I have. The only I am given is psych med to help me sleep, and that is poor too.

Sorry for rant.

[fbirder]

Yes, in the future PA will be fixable using CRISPR.

But it ain’t gonna be soon. For a start, they would need to identify exactly which gene(s) are responsible. I’ve heard that somebody at the University of Brighton is looking at genes responsible for other autoimmune diseases. She was thinking about adding PA to the list. But I’ve not heard anything for a few years.