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Danakir
Feb 10, 2014
English is my second language and this is a complicated topic, forgive me if I'm not as eloquent as I'd like to be.

StrangeAeon posted:

A patient with thal-major faces a lifetime of blood transfusions and iron-chealtion treatments in a constant struggle to gain healthy blood without having so much iron that your blood effectively turns to acid.

My medical condition has a similar outcome if completely uncontrolled leading into coma. Or, well, I suppose I should say my disability. That's the problem, really. Most people just don't think of it that way and that conditions even people like me to similarly dismiss it. It doesn't help that it's widely misunderstood too despite most people being convinced they understand it well.

Which is my longwinded way of saying thanks for sharing that, it makes me feel like it's okay to talk about my own disability.

So, speaking of invisible disabilities, you ever heard about

Maturity-Onset Diabetes of the Young

Even amongst people who are well-informed about diabetes, there's a mistaken belief that all forms of diabetes fall under type 1 and type 2. It's a pretty fundamental misunderstanding of what diabetes even is. Diabetes is a group of metabolic disorders that all have virtually nothing to do with each other aside from involving high blood sugar, it's actually a very broad umbrella. For instance, type 1 is an autoimmune disorder wherein white blood cells attack the insulin-producing cells of the pancreas directly leading to declining and then permanent loss of function over time whereas type 2 is a condition involving increased insulin resistance of your cells but no damage or loss of function to the pancreas.

And then there's MODY. MODY itself represents a wide set of unique disabilities that symptomatically express themselves with diabetes and often (but not always) respond to similar treatments but have different sources. What they all have in common is that they're the result of mutation in a single gene. It's a rare condition with less than 1% of adults living with diabetes having the diagnosis.

So what about you?

I have MODY-5, which itself is a fairly uncommon form of MODY associated with atrophy of the pancreas and renal disease along with the usual potential long-term health risks that come with all forms of diabetes. The atrophy takes place because MODY-5 causes the metabolic receptors that should receive signal to produce insulin in my otherwise healthy pancreas to malfunction severely. Since my pancreas is otherwise healthy, this leads to atrophy over time which means that a small amount of natural insulin production eventually turns into nothing worsening my condition.

Over time, this has made me dependent on insulin injections to live along with around half a dozen pills I have to take twice daily. Let's just say that when Hisao looked at all the meds that he's now required to take just to not freaking die, it was what we might call a mood for me. I also have to follow a fairly strict diet otherwise my problems will worsen, you don't realize just how processed sugar is in everything until having too much might send you into the emergency room.

But I really don't have a choice. Not unless I just want to give up on myself, which isn't happening.

Diagnosing rare mutations is hard

It took around two and a half years while my condition kept getting worse. The first warning sign was that I kept losing weight at an alarming rate for seemingly no reason, but MODY is so rare and poorly understood outside of endocrinologists specialized in diabetes that it flew under the radar completely. I went on losing more and more weight, until eventually I fainted because of what's known as diabetic ketoacidosis. Yeah, it's exactly what you think it is. Your blood turns acid. After that happened and with the help of expensive genetic screening, we finally figured out what was wrong with me.

There's not a lot of research going into MODY-5 though, so figuring out the best treatment for me was pretty laborious in itself. Other people with rare conditions will probably understand what I mean when I say that it's very frustrating how much of medical treatment for our disabilities is closer to guesswork than proper protocol.

I don't have a name for this section

There was going to be a section here about the prevalence of diabetes in the eyes of the public means there's a false sense of self-assurance in people that they understand everything about you and that they know your limitations. In a way, that's just as dangerous as ignorance because it makes people very confident in their misunderstandings and close-minded to being corrected.

At least, it could be worse. I live somewhere with socialized healthcare, so I don't have to worry that unemployment or financial strain might directly lead to me being denied life-saving insulin. I have pretty strong feelings about how hosed up that is.

I guess... what I'm trying to say is even if you think you know what someone's disability is all about and what they should and shouldn't be capable of as a result, maybe just take a step back instead. You never really know, even with good intentions.

Sorry that last paragraph kinda fell apart, I'll try to organize my thoughts better on the topic and maybe write a follow-up later.

Danakir fucked around with this message at 04:01 on Jul 7, 2021

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Danakir
Feb 10, 2014

Falconier111 posted:

Psycho Lawnmower, Violet_Sky, Dance Officer, StrangeAeon, Danakir, I’d like to include some of your posts in the OP. My dedication to oral history ethical standards is decaying over time, but it’s still intact enough that I need your explicit permission (in the thread or in a PM) to include them in the OP, and you have the right to have the link expunged at any time.

I'm still thinking about that follow-up I mentioned, it's a difficult topic and I'm worried I might be poorly equipped to do it justice. With that said, feel free to use my post in the OP.

As for reposting the LP on Ao3, if it can serve as a backup then I don't see any problem with that.

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