Frail Skin Disorder
Frail skin disorder is a real genetic disorder with a life expectancy of about age 30, compared to 36 for classical CF (the more serious version of my condition -- I don't really have an estimate of life expectancy for my condition and there's no good way to talk about that).
This is a piece about Pale Skin Disorder, a metaphor I've used for a long time, and the phrase Frail Skin Disorder is kind of inspired by that: How our mental models shape health outcomes.
If you scroll down to the roots of the problem in this piece you get an overview of a different mental model for genetic disorders:
Skin is part of The So-called Immune System and compromised skin is a significant and underrecognized issue for CF. So the way to bet is these kids with frail skin typically have unrecognized infection as part of the pathology.
Trypanosoma -- AKA Chagas Disease, African Sleeping Sickness and Kissing Bug Disease -- is associated with poverty housing and I have reason to believe it's under diagnosed.
The literature says it's not treatable. My firsthand experience says it's treatable.
There's more than 30 pieces about Trypanosoma on my retired health site atypicalcysticfibrosis.blogspot.com, some of which are found under this label.
If you get the kid new clothes and within a few days their fingernails go to hell, they probably have trypanosoma.
Zithromax is probably cheaper and less toxic than the antiparasitics typically used to treat trypanosoma. In my experience, zithromax and levaquin both help, but that's anecdotal.
If you are a legal adult treating yourself and you believe an internet stranger, you are basically free to act on that. If you are a parent or medical professional, it's more complicated.
Please see Staying Legal.
Clothes as recommended in the first link above is not typically viewed as medical treatment. If it makes sense to you that stretchy clothes and lightweight shoes will be reasonable accommodation, you probably don't need to worry about being dragged into court for taking your kid shopping.
Ideally, you should read the entire site for atypicalcysticfibrosis.blogspot.com but the pieces listed here are intended to jumpstart an understanding of genetic disorders and things likely to be pertinent to this condition.
If you are DIYing it, Skeptics tells you where to start safely. Changes to diet etc after keeping a journal are generally not viewed as medical treatment and if you follow the process I lay out, you should be safe.
Read, read, read and if you don't understand it, don't do it. Keep reading.
See also Caveat Emptor on Formulary of Life and the FAQ on atypical CF.
If you need Zithromax or something like that, that's medical treatment.
There are two pieces called Neurological stuff and they contain different information. Make sure to use that link and not what's in the archive.
Scroll to the bottom where it talks about wheelchair bound people. It links to several pieces.
I think the chronic sores these kids get are similar to bedsores. It should be caused by impaired lymph flow from being wheelchair bound and the clothes is likely to be the primary treatment to get these kids more active safely so that will improve.
This is a comment by me on Hacker News about the lymphatic system. It's quoted in the piece called Quadriplegia linked in the section about wheelchair bound people.
You also should read The Normal Progression of Cystic Fibrosis. That's generally useful information for most genetic disorders.
And Protein Folding Notes. My old notes list Ambrotose as the glyconutrient in question.
They changed the formula for Ambrotose and I had to stop taking it. I'm allergic to shrimp and they began using shrimp as a source of something.
Glyconutrients are part of The Trifecta and important for skin healing. It's a nutritional supplement. No doctor permission required.
These three pieces are about burns and that will help you figure out how to heal skin rapidly. Again, a lot of that is diet, not drugs, and you can eat whatever you like without a prescription.
I recommend you buy the clothes and start taking out the trash immediately after meals. That's a safe way to start helping them before lymph flow improves. You need that improved before treating for infection.
See HIV and AIDS for a discussion of PA which anyone with a compromised immune system is likely to have and additional notes related to germ control and meals.
So buy the clothes, take out trash after meals, read my writing, start a journal.
Give it at least a week before you do anything else.
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