Amy * she/they * living with fibromyalgia, me/cfs, hashimoto's thyroiditis, depression, and anxiety, among other things * my Askbox is always open * I follow/reply as PhantomFlutist
In case anyone finds it helpful because mobility aids are horrifically expensive and inaccessible…
And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…
Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.
He also is working on cheap, open source, accessible designs for beach chairs, off road chairs, motorized attachments (think smart drive), and so on. Plus he skateboards in his wheelchair. Cool dude, helpful info, pass it on.
It's incredibly sad people have to resort to this, but it's a damn good resource. Use it. Spread awareness. Maybe one day people with physical disabilities won't need DIYs like this. But until then, reblog and share.
Researchers who discovered a mechanism that prevents B cells from attacking the body’s own tissues in autoimmune diseases win Crafoord Prize
"Two researchers in the US and Australia have discovered important mechanisms that prevent B cells from attacking the body’s own tissues in autoimmune diseases like arthritis, lupus, and multiple sclerosis—and in the process have won a prestigious prize.
Normally, the body’s immune system protects us from viruses, bacteria, and foreign substances. However, in autoimmune diseases, the immune system starts attacking tissues in the body instead.
Researchers had long tried to discover the cause of autoimmune diseases. But, Christopher Goodnow and David Nemazee, independently of each other, adopted a new approach.
They asked why we do not all develop these diseases. Their focus was on B cells which, together with white blood cells and T cells, are the building blocks of our complex immune system.
“They have given us a new and detailed understanding of the mechanisms that normally prevent faulty B cells from attacking tissues in the body, explaining why most of us are not affected by autoimmune diseases,” says Olle Kämpe, member of the Royal Swedish Academy of Sciences and chair of the Crafoord Prize committee that awarded the pair 6 million Swedish kronor ($600,000).
Neutralize B cells
In recent years, physicians have started to experiment by using existing drugs to neutralize B cells for patients with severe autoimmune diseases, including lupus, rheumatoid arthritis, and multiple sclerosis, which has proven to be very effective at improving their quality of life.
Thanks to this year’s Crafoord Prize Laureates, we have gained fundamental new knowledge about what is happening in the immune system during autoimmune disease attacks.
“This also paves the way for development of new forms of therapies that eventually can cure these diseases—or might prevent them in the future,” said one professor of clinical immunology at the Royal Swedish Academy of Sciences...
More details from the video, since the article glosses over the particulars:
"The laureates discovered what is now called B cell tolerance.
When B cells develop in the bone marrow, not all of them are perfect. To remove the faulty ones, a mechanism starts, in which defective cells are programmed to destroy themself through apoptosis.
The laureates discovered two new mechanisms that are used if some of the bad cells are left. Re-editing, where the immune system alters the combination of receptors, and anergy, that silences B cells with self-reactive receptors.
The laureates were able to demonstrate that these mechanisms sometimes fail. This means that faulty B cells can cause an attack on the body's own tissues – leading to autoimmune diseases.
Thanks to the laureate’s discoveries, doctors like Anders Bengtsson soon felt able to start treating patients with lupus, arthritis, multiple sclerosis, and many other autoimmune diseases, with medicines that eradicated B cells.
Anders Bengtsson: "I'm very happy that B cells has gotten so much attention because of the laureates. I have seen my patients getting so much better and getting a better life."
Autoimmune patient: "Today, I feel very good. I really have hope in the research that it will revolutionise things and perhaps even cure it all. That’s what I want, hope for, and believe in.""
-Article via Good News Network, April 6, 2025. Video via The Royal Swedish Academy of Sciences, January 29, 2025.
I HATE this insistence that we have a moral obligation to worsen our health for the "greater good!!"
"Don't ignore politics-"
STOP. STOP IT. If that's what it takes for you to survive, do it.
There's a reason in the mental hospital they block the news channels! It fucks people up! People find the world so damaged, future so hopeless, and situations so overwhelming they literally kill themselves!
Yes, yes, the activism guilt-tripping is supposed to be for those who simply don't care, but the disabled people who do care are the ones who wind up feeling guilty!
"It's a privilege to be able to ignore politics-"
No, it's a privilege to be able to pay attention to politics without having to be literally hospitalized.
Do. What. It. Takes. To. Survive.
"I need ALL of you to start paying attention-"
Wrong. You need all of us who are ABLE to start paying attention.
Do what it takes to survive.
They are asking you to join in a 70-mile hike up a mountain, where in order to win, as many people as possible must reach the top as quickly as possible! But you are in excruciating pain and have no legs! There is no accessible way up the mountain! In trying to climb the mountain, you will cause yourself irreparable harm and likely death! You feel bad, you're letting everyone down, you can't keep up, you're about to fall, but your friend is saying "hey, I get it, sometimes my legs get super sore, but you have to keep climbing! It's our duty! Keep going! The only way to save everyone is if we do this together!"
They DON'T get it. Even if they say "well I know so-and-so who also has no legs and he just uses his arm-strength and he's at the top already, what if I carry you for a few steps until you have your strength back?" You're not him! He's clearly aquired tools and strengthened muscles you have not, and might never be able to! Only YOU know what you can handle. Do not fall to your death because you feel guilty!
Survive.
Survive.
Sometimes, the biggest act of resistance is surviving.
I know we talk a lot about keep jumping on boxes, but I'm honestly so grateful for Joe hills' knife theory; a variation on spoon theory that says once you're out of spoons, you can choose to take knives instead in the knowledge that it will hurt later. and the number of times I've told myself 'ok let's take the knives' is so high that I've found it really helps to acknowledge it. Thanks, Joe
I think there is a message here that a lot of people don’t get: there is a cost when you do not have the spoons for something and some force compels you to do it regardless
this is the first I’ve ever heard of “knives” in the context of disability, but I’m disabled and retired entirely because I took more knives than I can even begin to count at my old job, and was never given a chance to recover from all the stabs and slices
so i feel like “knives” could do for being more widespread, so that people better understand the choice they’re making and the toll it can take if they do things that they don’t have the spoons for
somehow instead of saying "as a treat", I've started using the phrase "for morale", as if my body is a ship and its crew, and I (the captain) have to keep us in high spirits, lest we suffer a mutiny in the coming days.
and so I will eat this small block of fancy cheese, for morale. I will take a break and drink some tea, for morale. I will pick up that weird bug, for morale.
I'm not sure if it helps, but it does entertain me
I appreciate this video a lot--people don't realize how important it is to start slow if you're trying to come back from a completely sedentary lifestyle, and they get really hurt as a result. Straining your muscles too much, too suddenly can land you in the E.R. and the wrong joint injury can permanently affect your mobility, so please start with absolute basics and easy stretches!
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