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I have a couple.
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Celiac disease. Most people, if they’ve heard of it, believe it’s a physical intolerance to gluten/wheat similar to lactose intolerance. Or, many people think it’s semi-imaginary gluten intolerance and some insist it doesn’t even exist. In fact it is a serious autoimmune disease that affects about every system in your body, and can produce dozens of symptoms ranging from complete debilitation to mild discomfort. Hair loss, dry skin, chronic diarrhea mixed with constipation, anxiety, memory loss, brain fog, insomnia, extreme fatigue, slow growth in children, anemia, osteoporosis, and even more… plus can lead to other autoimmune diseases. Nobody knows what causes Celiac as 30x as many people have the genes as ever develop it, and it can start at any time in life.
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type 1 diabetes. Most people have heard diabetes as the 24x as common Type 2 Diabetes, and believe diabetes in general affects overweight people and has something to do with eating “too much sugar”. That’s not quite right for type 2 but it also has nothing at all to do with type 1. T1 used to be called “juvenile diabetes” because it affected people from ages 0-25. However, they changed the name because they found adults could get it, which is what happened to me (called LADA). Type 1 and Type 2 are practically opposite conditions that both affect your glucose regulation and have overlapping effects. Type 2 is where your body puts out so much insulin, it stops responding to insulin, called insulin resistance. It can be reversed to some extent by diet and exercise. Type 1 is an autoimmune condition where your body destroy the cells that produce insulin, leading to no insulin in the body at all, which can quickly be fatal. Unlike type 2, there’s no lifestyle or diet correlation, only genetics.
I find that the entire category of auto-immune diseases are a thing most people fail to really "get". Especially if it is even moderately uncommon.
One I would add to this (though it has never affected me) is diabetes insipidus.
Biggest misconception about this (and doctors don't help here at all) is it must be another name for type one or type two diabetes because we always hear "there are two types". Nope, it's totally sovereign.
Another misconception is it's one of those rare things. Literally anyone can develop it as a result of a side effect of super common medications such as lithium and a few vaccines that are fortunately no longer in circulation.
And a third is it's not serious. It's incredibly serious. Imagine all those misconceptions you hear about diabetes and sugar and apply it to water instead of sugar. Scares me to think about it.
Good note, that's another one that's totally different. Diabetes was originally named for a large flow of urine, which is the connection I guess, but insipidus doesn't have the connection to high blood glucose. Type 1 and type 2 are Diabetes Mellitus, named for the urine smelling sweet (like honey, ooh!) from the sugar expelled in it. The kind I have is also called Type 1.5, but it's more like type 1. There's also an even more rare kind, similar to type 1, called MODY, which is purely genetic.
Sounds like the moral of the story here is they really need a new naming system for all of this.
Yes, the autoimmune pancreatic deficiency ones should be split off from type 2. Insipidus should just be called something totally different. That's a recurring conversation on T1 discussion groups. People ask things like "were you really fat as a kid? Did you like, just eat so much sugar you got diabetes?" and no, I was 5'11" and 130 lbs when I was diagnosed.
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Definitely agreed on people not knowing what diabetes insipidus is. If my wife did not have medication for it, she would likely dehydrate and die unless she had a constant source of water.
My brother was recently diagnosed with type 1 at almost 50.
We are having a very quick crash course in it.
Yeah, I was about 40 and I had no idea what was happening. I had just been getting better after being finally diagnosed with Celiac. I was really sick and even saw one of the major hospitals in the country for 2 weeks, they didn't figure out what was going on... then I finally had to go to the ER when I was, they said, 1-2 days away from dying or going into a coma. Definitely caused some problems in between then.
I haven't seen much T1 action on Lemmy yet, but the communities on reddit are quite good.
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