Hello all,
As a blogger dedicated to writing about different games, celebrities and political issues, I feel it is important to address some of the things that aren't always published on a massive scale, I will be writing this article about Epidermolysis Bullosa (EB for short), introduction aside, let's get into the details of this.
What is it?
It is a congenital condition that makes the skin not produce the right protein for it to keep itself healthy and stretchy. The term 'butterfly children' is used because one touch, rub or friction to the skin, can cause it to rip and blister; the video below will show you exactly what it is, how the child has to live with it and also how long it takes to wash, bath and re-dress his wounds.
The next sentence I have to write comes to me at no ease; people who suffer with EB only have a life expectancy of around 30 years of age (information from the video). I find this really shocking, there are two reasons for this: it's a young age to pass away at, it's extremely young and punishing. Secondly; he has to endure this pain for 30 years.
Treatments?
There is currently no direct cure for EB, however, there are a few treatments available that can help reduce the pain and risk of infection.
It's important to raise awareness of all of these illnesses that we don't really hear about very often. A prime example of an awareness we had spark the news was ASL in 2014. The icebucket challenge was absolutely formidable.
The video can be found here along with the article, I must warn you, whilst the video is factual and of a real child; parental discretion is advised as the scenes are quite graphic through the video. I personally found it very difficult to watch, I've never felt more sympathy for anyone on such a high scale - truly remarkable how he manages through it, stay strong.
You can find more information on the NHS website about this illness :)
As a blogger dedicated to writing about different games, celebrities and political issues, I feel it is important to address some of the things that aren't always published on a massive scale, I will be writing this article about Epidermolysis Bullosa (EB for short), introduction aside, let's get into the details of this.
What is it?
It is a congenital condition that makes the skin not produce the right protein for it to keep itself healthy and stretchy. The term 'butterfly children' is used because one touch, rub or friction to the skin, can cause it to rip and blister; the video below will show you exactly what it is, how the child has to live with it and also how long it takes to wash, bath and re-dress his wounds.
The next sentence I have to write comes to me at no ease; people who suffer with EB only have a life expectancy of around 30 years of age (information from the video). I find this really shocking, there are two reasons for this: it's a young age to pass away at, it's extremely young and punishing. Secondly; he has to endure this pain for 30 years.
Treatments?
There is currently no direct cure for EB, however, there are a few treatments available that can help reduce the pain and risk of infection.
It's important to raise awareness of all of these illnesses that we don't really hear about very often. A prime example of an awareness we had spark the news was ASL in 2014. The icebucket challenge was absolutely formidable.
The video can be found here along with the article, I must warn you, whilst the video is factual and of a real child; parental discretion is advised as the scenes are quite graphic through the video. I personally found it very difficult to watch, I've never felt more sympathy for anyone on such a high scale - truly remarkable how he manages through it, stay strong.
You can find more information on the NHS website about this illness :)
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