Epidermolysys Bullosa and putting kids in vats

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In summary, Marky's story is a typical case of EB, where proteins that bind the skin together are not produced anymore, leading to constant wounding. He thinks about how EB patients could be launched aboard the ISS and live long enough for gene therapy to finally reach the proper stage and fix it, but raises concerns about the potential for problems such as bacteria, muscle atrophy, and abnormal skeletal development. The rest of the post is speculation about possible solutions to these problems.
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knocking01
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This is Marky's story, a typical case of EB:



You don't have to watch it. EB is a class of genetic diseases where certain proteins that bind the skin together are not produced anymore, as their mutated genes encode for faulty proteins. Information of the internet is scarce, but it is clear that at killing you it is the constant wounding that does the most.

I am not related to Marky or EB, but watching the video, the first thing I thought was: what if EB patients could be launched aboard the ISS, on special medical modules designed only for them, could then they live long enough for gene therapy to finally reach the proper stage and fix it? I couldn't help but think, "probably".

But if this is plausible, would it be possible to replicate a similar frictionless environment in a large vat? I'm picturing a Minority Report kind of situation with the precogs. What kind of fluid could be designed so that it would be suitable for permanent skin contact? Water-based, oil-based, glycerol-based, or an organic compound blend? As a software engineering student, this is as far as I go.

On the vat itself: it could be roughly 3 meters in diameter and 1.5 meters in depth, the fluid dense enough to offer stronger buoyancy than water, and deep enough so to allow moving, "sitting" and turning frictionless. An evacuation system for feces and urine could pump them out through an extensible tube and then the fluid would be replenished. The air in the room is filtered and possibly enriched in oxygen, the fluid is sterile and self-sterilizing. A lift system operates a stretcher made of a stiff metal frame and tensioned Teflon-like suspension, to move the kids in and out of the vat for the night. Knock-out anesthetics could be used to make the kids unconscious for the entire length of the night, impeding any movement.

What do you think, and what do you think in particular of this hypothetical fluid to keep them in some 16 hours/day for the next 20 years? Could something like it exist?
 
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I appreciate your empathic approach to the problem. Your post is pure speculation, however.

I am picking one aspect of the post out of many that have problems because:
Genetic research may not evolve enough to remediate the problem. It may never have a 'fix' like that. This is hopeful speculation.
I chose:
Suspension in a vat of water has problems.
A. Check out trench foot on google. Long period immersion has fancy name but I like trench foot.
Bacteria would be a horrible problem in oil long term. Minus the trench foot thing isotonic water might be a better choice.
B. You would have to catheterize the patient. Otherwise where does the urine go?
C. How do you handle feces?
D. Muscle atrophy and subsequent abnormal skeletal development would result in a severely deformed and crippled adult. -- all due to lack of proper muscle development induced by weightlessness

As a side note: NASA has a long list of changes to human physiology due to weightlessness - they simulate this condition with neutral bouyancy immersion suits underwater. All of their test subjects are completely healthy adults.

I realize you can respond 'But they can do x, y and Z' to solve the problem you brought here. Not good. Why? It is using more speculation to remediate speculation. In other words a kind of logical fallacy. So please do not do that.

I think you should definitely consider a career in the medical field because of your outlook. You probably do need to learn a lot more biology to correctly and thoroughly understand this one problem you presented. We have folks here in Medical Physics which might be a fit for you. Paging @Choppy

FWIW - do you know the term 'Orphan Disease'? - some pediatric conditions are horrible and parents really try to keep kids alive in hope of cures in the future <- your point of view. It is hard to tell parents and a kid that there is no known cure. This is why so many, um, snake oil medicinal treatments exist.
 
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Related to Epidermolysys Bullosa and putting kids in vats

What is Epidermolysis Bullosa (EB)?

Epidermolysis Bullosa (EB) is a rare genetic disorder that causes the skin to be extremely fragile and prone to blistering and tearing from minor friction or trauma. It is caused by a defect in the proteins that hold the layers of skin together.

How does EB affect children?

EB can affect children in different ways depending on the type and severity of the disorder. In some cases, it can cause mild blistering and skin irritation, while in others it can lead to widespread blistering, scarring, and deformities. EB can also affect internal organs and lead to complications such as difficulty swallowing and breathing.

Why would kids with EB need to be put in vats?

Putting kids with EB in vats is not a recommended or approved treatment for the disorder. This idea may stem from a misunderstanding of a treatment called "wet wrap therapy," where bandages soaked in medication are applied to the skin to help with healing. However, this is done in a controlled and sterile environment, not in a vat.

Is there a cure for EB?

Currently, there is no known cure for EB. Treatment mainly focuses on managing symptoms, preventing infection, and promoting wound healing. However, research is ongoing, and there are promising treatments being developed, such as gene therapy and stem cell therapy.

Can children with EB lead a normal life?

Children with EB can lead fulfilling lives, but they may face challenges and require special care and accommodations. With proper management and support, they can attend school, participate in activities, and have meaningful relationships. It is important to raise awareness and understanding of EB to create a more inclusive and supportive environment for those affected by the disorder.

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