Are there any linguists or psychologists here who can make sense of this?

[Buckeye_Democrat]

I'm assuming that the person in question was being sincere, which may not be the case.

I talked to a woman by telephone about our shared genetic condition called PXE. She mentioned her understanding of how the condition causes blindness, which was wrong.

Without going into great detail here, I explained to her how the disease causes blindness in "layman" terms -- e.g., "These other cells provide nutrients and oxygen to the cells that allow us to see, and..."

She complained that she couldn't understand it, but would I try again with the names of everything? I replied that I didn't see how that would help, but I'd try it.

So it changed to: "The retinal pigment epithelium, also known as the RPE, provide nutrients and oxygen to the photoreceptors, and..."

She replied, "Thanks! Now I get it!"

I asked, "Have you ever heard of the retinal pigment epithelium before?"

Her: "No."

Me: "Then how did that help? I could have incorrectly called those cells the 'gooble-goo-goo cells' or something just the same."

Her: "I don't know. It's just easier for me to understand things when I hear the actual terminology."

[Donkees]

1. As a visual thinker, 'retinal pigment epithelium' is easier for me to grasp because it's richer

in specific imagery than "these other cells".

[Buckeye_Democrat]

2. Maybe so? I'm a visual thinker too, though.

Or maybe it's called conceptual thinking?

I always scored extremely high in mathematical / visual imagery testing, but not nearly as well in verbal tests (although not too bad).

I didn't really enjoy English classes in school because it struck me as full of "useless fluff" not really needed to communicate ideas.

[Donkees]

3. It may be that you had already formed a visual map in your mind, because you were familiar with the

specific terminology before you spoke to her. It may be that she needed to form her own visual map by hearing the same specific terminology (?) Speaking for myself, reading "these other cells" didn't help me visualize the map of the situation.

[Buckeye_Democrat]

4. That might be the explanation.

Even in math, it's helpful to call variables 'x' and 'y' rather than say "this other variable".

I should have called them the gooble-goo-goo cells.

Kidding.

[Donkees]

5. It's also easier to find graphics when using the specific terminology :)

[Buckeye_Democrat]

6. Agree, but she's blind so I doubt that she looked at pictures.

By the way, Bruch's Membrane is "brittle" in PXE due to calcification of elastic tissue, and it eventually cracks, so that's the ultimate cause of the problem.

Cells in the retina, like other cells in the body, release a chemical called VEGF to stimulate the growth of nearby blood vessels toward them. It's more common as the cells get older. (Cancer cells also release lots of VEGF to help them stay alive and grow, like Trump versions of cells that are greedy bastards.)

The cracks in that elastic membrane allow the VEGF to leak through it, stimulating blood vessels behind it to appear through the cracks. Those new blood vessels often burst and the body reacts by creating scar tissue to stop the leakage. The scar tissue can also create a "barrier" between the RPE and photoreceptors, and the photoreceptors die. The RPE also removes waste products from the highly-metabolic photoreceptors, so they essentially "suffocate" in their own waste. Photoreceptors don't regenerate, unfortunately.

Edit: That's sort of how I explained it to her (leaving out other things that can happen), but with a little less terminology. The second time around, I called the cracks "angioid streaks" and the like, and suddenly she seemed to understand it! I still don't get it, really. I asked her repeatedly if my second explanation REALLY helped her, and she kept insisting that it did.

[Donkees]

7. I recall reading that the visual cortex in the brain plays a greater role in language processing

for blind people, so it would seem that specific image-rich terminology would be easier for the visual cortex to process into language. I believe her

Thank you for the detailed explanation of PXE, I found all of this interesting. I was familiar with VEGF, but wasn't aware of PXE.

[Buckeye_Democrat]

8. Thanks. It's very rare, so even most doctors don't know about it.

It appears to be mostly a blood disorder based on the cells where the ABCC6 gene is mostly active (liver cells). Plus there's been some Frankenstein-like experiments on mice with PXE (with their Abcc6 cells "knocked out&quot where the effects didn't show up if the PXE-mouse shared the same blood with a non-PXE mouse.

It surprised people because the calcification problems happen in various elastic tissues of the body. That's where it was assumed the gene would be most active.

I haven't read this idea anywhere, but the pattern that I've noticed is that elastic tissue that's near endochondral bones (bones which start out as collagen and become hardened later) seem to be the most affected. There's all kind of elastin in the hands that don't get "calcified" in PXE. Behind the eyes, there's an endochondral bone called the Sphenoid bone.

I first met that woman at a PXE conference years ago. I don't talk to her very often because she kind of annoys me sometimes, to be honest.

She latches onto all kinds of crazy ideas from "holistic medicine" too. I'm just not annoyed enough yet to stop answering the phone when she occasionally calls. I'm obviously sympathetic about her difficulties.

[Donkees]

9. I was just now reading about Serum Fetuin-A, being an inhibitor of calcification...

I can understand that these types of studies may not be as easily available to the blind woman, and her needing to rely on others to act as go-betweens. You are a good and patient friend to her.

There's so much to know!

Role of Serum Fetuin-A, a Major Inhibitor of Systemic Calcification, in Pseudoxanthoma Elasticum
http://clinchem.aaccjnls.org/content/52/2/227

[Buckeye_Democrat]

10. HOLY COW!! I can't believe that you posted that!

I sent a blood sample to an Alzheimer's researcher in England a few years ago! He read my conjectures about it and agreed it was worth a test! Bless his heart!!

They checked the amount of Fetuin-A (which was also believed to play a role in Alzheimer's) in my sample and it came back normal.

It's surely related to a chemical in the bloodstream that should either be removed by the liver or produced by it. There's people with fully-functional ABCC6 genes, but liver issues, who also develop PXE symptoms... like people with Beta thalassemia.

It's so amazing that you mentioned Fetuin-A!

EDIT: It took awhile before I got the results. My blood sample was obviously a low priority, but I don't blame them! I was shocked that they did anything like that! I doubt most researchers in the USA would be that helpful, to be honest.

[Donkees]

13. I just followed-up on the research you mentioned in post #8 and found the Fetuin-A

Wasn't able to spend much time on it this morning, but did detour to liver research too

[Buckeye_Democrat]

14. It was still a surprising concidence because there's so many...

identified proteins that seem to be involved in those processes!

It's like searching for a needle in a haystack, apparently.

The scientist in England also measured something called Serum Amyloid P, which was also normal.

[WinkyDink]

11. She wanted specifics instead of any old generalities. What's not to get?

[Buckeye_Democrat]

12. She won't recall any details.

I know her that well, at least.