Skin and CF

Cystic fibrosis significantly impacts all epithelial tissues. This includes the lungs and gut, but also includes the skin.

Most of the world knows CF as a serious lung disorder. The CF community is very well aware that it also seriously impacts gut function and this element can be deadly due to malabsorption and malnourishment.

But I've heard relatively little about the impact it has on the skin. In recent years, it has become apparent to me this is a major issue in the pathology of cystic fibrosis.

It is common knowledge in the CF community that CF causes severe aquagenic wrinkling. In layman's terms, we get extremely pruney when we bathe, far worse than is typical.

This is so extreme, it's actually being developed as a low cost test for CF for use in rural medical offices in India. A few minutes of soaking a child's hands in water serves as a surprisingly effective means to cheaply and easily refer CF patients for additional testing at big city hospitals.

Think about that for a minute. Your skin is the single largest organ in the human body. It helps regulate your temperature. And, critically, it is the very first line of defense in your immune system.

Yet, rather than keeping things out, if you have CF, it absorbs everything like a sponge. This is a major way in which your immune system is compromised.

So I am really picky about what I touch. I try to not touch things in public and I routinely wash hands after touching things like stair rails or crosswalk buttons. 

I'm picky about the fabrics I wear. I wear less synthetics than I used to. I'm okay with nylon and some spandex and a cotton-polyester mix. But I generally don't wear pure polyester and I generally don't wear rayon and I'm allergic to wool, so I can't wear that either.

I favor cotton or silk or cotton-silk blends. 

I gradually threw out all books and did my best to eliminate papers from my life.

I did my best to eliminate particle board furniture and upholstered furniture. I limit things like curtains in my life.

I currently have a place with a wood floor. Carpeting is a big problem.

I have spent at least ten years buying dirt cheap clothes and treating it like it's disposable. I buy t-shirts for $5 or less (as little as a dollar or less -- you can get holiday-themed t-shirts 90% off right after the holiday ends) and I'm still just throwing my clothes out regularly.

I expect this to end soon. I've recently had a really epic healing crisis and I'm feeling so much better than I have in years. 

My life is gradually returning to some semblance of normal. I am simultaneously capable of doing more normal things here lately and increasingly need to look normal due to my participation in various things in the small town I live in where I generally don't tell people I have CF.

When you have CF, everything you touch is a potential danger to you. Because your skin is part of the problem with your compromised immune system, finding ways to make your home less of a threat to your health is the easiest and most effective way to start giving yourself some breathing room to work on getting healthier.