I have Netherton Syndrome. This is an extremely rare genetic skin condition I was born with. I want to write a little bit about how this affects my life.
Sunday, April 10, 2011
Mysteries unfolded
So, I have to admit I took quite a break from writing on here. For the most part it was because I don't like to think too much about the condition. But then those times come where I wonder if others could perhaps help out with solving some of my mysteries. What I mean is sometimes there are some health problems and I wonder: "Is this because of my condition?" or is it something else. The reason I wonder is for example... I just discovered last summer after years of having this that I had foot fungus... gross I know. But the sad thing is I didn't realize because my skin is always peeling, so how should I know? Well, thank goodness that was figured out. Another example: I seem to get more cold than other people and I got head exhaustion much quicker than others too. Well, I read up on it one day and it said that people that have this condition, get cold easier and need it a bit warmer than room temperature, especially for children ( I remember that being difficult always having to go out in cold weather during recess). We are also more likely to get heat exhaustion much much quicker because the skin is what regulates our body temperature and when it's not in tact it doesn't work as well. Well, have many more examples and many more I would like to figure out... My question would be to anyone who has the condition or has kids with it is.... I seem to get constipated more than I would like to and diarreah. I've been having a really hard time just digesting food normally. My stomach doesn't feel good after I eat and I also get bloated. I have a lot of food allergies, so it may have to do with that. Any ideas? The weird thing is just that it's been like this off and on for 9 months, ever since I moved.
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