Welcome! (Again)
There's gonna be one of those (^) At the start of every post. Just a random thought.
Now, If I may drill down to the bedrock of this post.
There's gonna be one of those (^) At the start of every post. Just a random thought.
Now, If I may drill down to the bedrock of this post.
I'd like to thank everyone, firstly and... foremostly... That has viewed my blog and shared it on facebook. In a night I've had 93 pageviews. Keep sharing!
Also, I said I was going to post some of my writing on here, and I intend to keep my promise. At 150 pageviews, I'll put something On here!
Anyway, down to a serious matter. (If this was a TV broadcast the lights would dim and it would go to a close up of my face right about now) I wanted to share with some of you information about my condition, Arterial tortuosity syndrome, or ATS, if you like abbreviations. It's a very rare condition and I would like to clarify what it is, how it works and the other conditions attached to it.
Also, I said I was going to post some of my writing on here, and I intend to keep my promise. At 150 pageviews, I'll put something On here!
Anyway, down to a serious matter. (If this was a TV broadcast the lights would dim and it would go to a close up of my face right about now) I wanted to share with some of you information about my condition, Arterial tortuosity syndrome, or ATS, if you like abbreviations. It's a very rare condition and I would like to clarify what it is, how it works and the other conditions attached to it.
Arterial tortuosity syndrome is a rare congenital connective tissue condition disorder characterized by elongation and generalized tortuosity of the major arteries including the aorta. It is associated with hyperextensible skin and hypermobility ofjoints-
Jokes, I'm not gonna make you read a wikipedia entry. Like it says above, arterial tortuosity syndrome is a VERY rare heart condition. There are about 50 people in the world with it. It basically means the arteries are tortuous, or kinked. This doesn't cause many problems (lie), at least for me it doesn't. In America, there are quite a lot of other children with ATS. Most of them have an extreme case of ATS, or, I suppose, you could say I have a mild one. Most of them have all had operations on their hearts to make their arteries wide enough to pump blood. I could further show the tragedy of this situation by stating almost all of these people who have had operations are below 10 years of age.
Now you're probably thinking mine must be nothing compared to all this, but it's still very bad. This is very complicated to explain, but another condition usually attached to ATS is hypermobility, or "Double jointedness." And another condition attached to THAT is chronic fatigue. Now, if you have ATS, you might not have hypermobility, and If you have hypermobility, you might not have chronic fatigue. Not for me. I wound up with all three. I want to explain all of these individually, so I'll split this into three groups and tell you about each one.
Arterial tortuosity syndrome (ATS)
One of the worst things, personally, with ATS, is the fact that my body needs all the energy it can to help deal with it, so I end up with a low immune system. Bottom Line: I catch a virus like a hardcore football fan catches a ball accidentally shot into the stands by a player on the pitch. This leaves me sitting at home a lot. Another thing about ATS is because of my arteries, it's too dangerous to play any contact sports, but that's not too much of a drag. I guess when you grow up without sports you don't really care when you can't play them. Although the majority of my friends are lovers of sports. That complicates stuff.
One of the worst things, personally, with ATS, is the fact that my body needs all the energy it can to help deal with it, so I end up with a low immune system. Bottom Line: I catch a virus like a hardcore football fan catches a ball accidentally shot into the stands by a player on the pitch. This leaves me sitting at home a lot. Another thing about ATS is because of my arteries, it's too dangerous to play any contact sports, but that's not too much of a drag. I guess when you grow up without sports you don't really care when you can't play them. Although the majority of my friends are lovers of sports. That complicates stuff.
Finally, ATS causes flabby skin and droopy facial features. Now, some of you may be familiar with the common teenager's need to mock anything that looks different to them. I've been left severely angry (Refraining from using stronger... vocabulary here) when people mock me. Let me elaborate here. People have said I had "Bingo wings," or mockingly asked me, "What's wrong with my eyes." Of course, when they do, I turn round and explain to them angrily that it's the result of a serious condition and that only a sick person would judge someone like that, leaving them to walk away feeling extremely guilty. Then I realize I only did that in my mind.
Hypermobility syndrome (double jointed)
Not as amazingly rare as ATS, in fact, it's extremely common. This makes my joints, In layman's terms, all "Wibbly Wobbly." My joints are prone to "clicking out" a bit as a result. I can't write much because when I do my thumb painlessly dislocates (Picture that without cringing. I dare you.) Which means I use a computer quite a bit to write at school. This also means I can't walk very far either. My joints won't take it. Of course, this is one of the worst symptoms of all these conditions. When i'm out on trips with my friends it's always a concern i'll get tired of walking. The same thing happens on school trips, and a teaching assistant is always allocated to stay behind with me in case I lag behind the group, and believe me, i do. I sometimes even have trouble keeping up with a group of friends walking to and from lessons at school. The good thing is in 2010, I went on a two week intensive physio course. Basically, I did leg exercises at great ormond street. It was a really life changing fortnight. I really strengthened my legs, met a lot of great people who also had hypermobility, and most of all, got an extended summer holiday. Win!
Chronic fatigue syndrome
The worst of the bunch. This is tiredness. The severity of this conditions ranges from getting tired after a long day walking non-stop, to not being able to get out of bed in the morning. Chronic fatigue is terrible. At a lot of times, I can't manage a a full day of school. I have to limit playing out with friends on the weekend to an hour, tops, or I won't be able to get out of bed the next day. If I go to a shopping center for a day I'll be so tired when I get home I won't be able to think straight. I cannot stress how bad chronic fatigue is. Last year, my attendance at school was 40%. I know, right?
I always have trouble convincing people I'm not just lazy. usually when people ask about it, I just give them a half-baked answer and decide to tell them later. Sorry about that.
After I get viruses, I tend to get very tired. Recently, for example, I got ill for a week, but it's taken me more than two weeks to get back into school for two hours. usually, I get Wednesdays, the middle of the week off, to rest and ensure I can go in for the rest of the week. On the first two days of the week, I go in at ten. and after all of this, it's still a rare occasion that i'll make it in for the four days I'm supposed to go in.
So that completes the complicated trilogy of conditions. bad, huh? I have to admit, though, although I really don't like all this, If someone offered me the chance to just be normal, with no complications or conditions, I wouldn't accept that offer. It's made me who I am, and I know without them, I'd be a completely different person.
Not as amazingly rare as ATS, in fact, it's extremely common. This makes my joints, In layman's terms, all "Wibbly Wobbly." My joints are prone to "clicking out" a bit as a result. I can't write much because when I do my thumb painlessly dislocates (Picture that without cringing. I dare you.) Which means I use a computer quite a bit to write at school. This also means I can't walk very far either. My joints won't take it. Of course, this is one of the worst symptoms of all these conditions. When i'm out on trips with my friends it's always a concern i'll get tired of walking. The same thing happens on school trips, and a teaching assistant is always allocated to stay behind with me in case I lag behind the group, and believe me, i do. I sometimes even have trouble keeping up with a group of friends walking to and from lessons at school. The good thing is in 2010, I went on a two week intensive physio course. Basically, I did leg exercises at great ormond street. It was a really life changing fortnight. I really strengthened my legs, met a lot of great people who also had hypermobility, and most of all, got an extended summer holiday. Win!
Chronic fatigue syndrome
The worst of the bunch. This is tiredness. The severity of this conditions ranges from getting tired after a long day walking non-stop, to not being able to get out of bed in the morning. Chronic fatigue is terrible. At a lot of times, I can't manage a a full day of school. I have to limit playing out with friends on the weekend to an hour, tops, or I won't be able to get out of bed the next day. If I go to a shopping center for a day I'll be so tired when I get home I won't be able to think straight. I cannot stress how bad chronic fatigue is. Last year, my attendance at school was 40%. I know, right?
I always have trouble convincing people I'm not just lazy. usually when people ask about it, I just give them a half-baked answer and decide to tell them later. Sorry about that.
After I get viruses, I tend to get very tired. Recently, for example, I got ill for a week, but it's taken me more than two weeks to get back into school for two hours. usually, I get Wednesdays, the middle of the week off, to rest and ensure I can go in for the rest of the week. On the first two days of the week, I go in at ten. and after all of this, it's still a rare occasion that i'll make it in for the four days I'm supposed to go in.
So that completes the complicated trilogy of conditions. bad, huh? I have to admit, though, although I really don't like all this, If someone offered me the chance to just be normal, with no complications or conditions, I wouldn't accept that offer. It's made me who I am, and I know without them, I'd be a completely different person.
That was dramatic. Let's lighten the mood with... KITTENS!Aw, the little thing can fit in the glass!
Anyway, Thanks for reading. May the forks be with you. Isn't that the line?
-Joe
Very touching:) And I like the kitty
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