Need your help please guys...

[Shen]

Hey guys,

I could really do with your help. As you know (or not) I have a genetic condition called Ehlers-Danlos Syndrome. I have the Hypermobility type with marfanoid tendencies and signs of the Vascular type also. It is a painful condition with regular dislocations of every joint, even ones you don't know you have until you feel them go, I regularly end up in hospital with dislocations, and often have to use a wheelchair because I can't physically walk (mostly when my spine partially dislocates). It also has a lot of side effects such as Chronic Fatigue. There is no cure.
There are 3 clinics in the country which deal solely with EDS one in London, one in Glasgow and one in Leeds. All have a dedicated team of physiotherapists, occupational therapist, podiatrists etc to help treatment. There is also one for children at Great Ormond Street Hospital. However the doctor that runs the one in Leeds is retiring and the clinic is closing because the NHS don't view it as necessary. This means we will lose some of the few trained physios, occupational therapists, podiatrists etc which greatly help in managing the condition. The closure will leave 300+ people with the condition back into the care of their GP, who sadly are largely ignorant of the illness (it took 18 years for me to get diagnosed and many even longer) because there is no outward sign, it is often dismissed as attention seeking. The ones that do understand don't have the resources to properly care for their patients, and often we end up relying on painkillers such as tramadol and morphine to manage the pain whilst being left basically without other help.

Anyway I was wondering if you guys would sign this petitionhere to keep this clinic running and find a replacement for the retiring doctor. The Hypermobility Syndrome Association is conducting a campaign and we have a bunch of MPs fighting our corner, we may not get anywhere but we have to try, a lot depends on it. The more signatures we have the better.

We would really appreciate your help. The more people the better really.

Thanks in advance.

[Shingster]

Signed, hope you guys save the clinic!!

[saltysam]

signed,good luck with this.

[Yi-Long]

Signed. Obviously I expect some sexy pictures in return.

[Markgway]

Signed. Sounds like a terrible illness and I really hope your clinic remains open.

Yi, do you always have to be such a pervert??

But seriously if he gets pics I want them too...

[Shen]

Thanks guys, it's really appreciated.

Yi: stop being such a perv

Mark: yeah it kinda sucks, I'm waiting for an operation on my shoulder because my collarbone keeps popping out of place, its a temporary fix but better than nothing, because its a problem with collagen, mine is produced wrong, the ligaments aren't elastic and just stretch back out over time, leaving the joint in the same state as before.
I kinda wish there was a cool story to tell as to why stuff happens, you know like, i pushed a kid from in front of a speeding car, or I saved a baby from a burning building. But actually, it just dislocated when i sneezed and doesn't want to go back into place. It does however make me look hard because i can relocate nearly every joint by myself. It does quite a bit for your street cred to relocate your shoulder infront of a class without a doctor or painkillers However you damn well feel it the next day!
My spine has currently decided to play up and my vertebrate keeps slipping slightly which causes kind of a lot of pain. It does kinda suck to be 22 years old and in constant pain, and regularly doped up on tramadol or morphine. But life goes on I'm lucky i still have all my mental faculties and can go to uni and get a degree, learn another language etc. Could be worse

[Markgway]

I really admire your fighting spirit and refusal to wallow in self pity.

It's in the face of adversity we discover the true measure of ourselves.

I'd probably just cry a lot.

[Shingster]

I'd probably just cry a lot.

You're crying now aren't you, you big pussy!

It does seem like an disproportinate number of the BnB regulars have been through the mill and back healthwise, obviously Shen but also Yi with his bowels and salty with his joint problems. Doesn't Brad have slight problems with his eyes as well? I had my own health issues a few yrs back although nothing as serious as the aforementioned user's problems thankfully.

[HungFist]

Signed.

Don't worry about pictures Just ask your Asian friend for a favor

[grim_tales]

I would sign, but the link is broken I get SERVER NOT FOUND.

[Yi-Long]

I'd probably just cry a lot.

You're crying now aren't you, you big pussy!

It does seem like an disproportinate number of the BnB regulars have been through the mill and back healthwise, obviously Shen but also Yi with his bowels and salty with his joint problems. Doesn't Brad have slight problems with his eyes as well? I had my own health issues a few yrs back although nothing as serious as the aforementioned user's problems thankfully.

We're all a sad bunch of losers, yeah. Is that what you're trying to say, Shing? Is it? IS IT!?!?!?

[Shingster]

[Markgway]

I'd probably just cry a lot.

You're crying now aren't you, you big pussy!

Yesssss...... wahhhhhh

It does seem like an disproportinate number of the BnB regulars have been through the mill and back healthwise, obviously Shen but also Yi with his bowels and salty with his joint problems. Doesn't Brad have slight problems with his eyes as well? I had my own health issues a few yrs back although nothing as serious as the aforementioned user's problems thankfully.

I also have health problems. I've pehaps mentioned them before... but don't want to again lest it look like I'm trying to compete for sympathy. But yeah we're a bunch of old crocs around here...

[Yi-Long]

Didn't you have a depression like I have? I think there were a few of us moody down bastards on this board.

Plus, you're already Scottish (it's Ok Mark, we know. We know. You can let it out....), so obviously that's one of the worst handicaps anyone can be burdened with.

[Markgway]

Plus, you're already Scottish (it's Ok Mark, we know. We know. You can let it out....), so obviously that's one of the worst handicaps anyone can be burdened with.

Yeah, I've suffered from depression. I'm doing pretty good right now though. I was thinking more about physical problems. I have them with my stomach and back.

[gasteropod]

Chronic fatigue here, although I've just started trying coffee and bizarrely it's actually masking my symptoms a bit, strange since tea and Red Bull do no such thing.

[Shen]

Chronic fatigue sucks, i can totally sympathise Gasteropod. Its hell just doing the most basic things then having to sleep afterwards. It makes me feel so lazy even though i cant help it. Sometimes just taking a shower and preparing dinner is enough to make me exhausted, particularly if im having a flare up of the EDS. I have fibromyalgia as a side effect of the EDS and CF is part of this, in a fibro flare I can pretty much sleep for two or three days at a time just waking for an hour or so a day.

EDS does have its fun side though, I totally grossed out a guy in my Italian class, he is a retired doctor. I pulled myself up from sitting the floor and in the process dislocated my shoulder and my collarbone. *Cue awesome sound effects of a loud crack and grating noise*. It took a few minute to relocate them both and he looked a bit green whilst watching me, ya think he'd be used to such things. I find these situations really funny because people look so sick, and i just have an evil sense of humour And if you can't laugh at such things then your life will suck more.

[Markgway]

One side effect of depression is that I do seem to get tired awfully easy and at random times. I've been known to be wide awake during the night and sleepy all day. Pain in the arse really.

[Yi-Long]

One side effect of depression is that I do seem to get tired awfully easy and at random times. I've been known to be wide awake during the night and sleepy all day.

Same here. Extremely annoying

Pain in the arse really.

Well.... I think we both know that that has another reason, Mark.

I'm sure Brad can explain.

[grim_tales]

One side effect of depression is that I do seem to get tired awfully easy and at random times. I've been known to be wide awake during the night and sleepy all day. Pain in the arse really.

Sorry to hear that Mark I wouldnt say I'm "depressed" but I do feel unhappy/sad sometimes and stuff, gone to see a counsellor, difficulty interacting, you all know my "problems"

[Markgway]

Well.... I think we both know that that has another reason, Mark. I'm sure Brad can explain.

You seem to know an awful lot.

[Yi-Long]

Well.... I think we both know that that has another reason, Mark. I'm sure Brad can explain.

You seem to know an awful lot.

Stop coming on to me, Mark.

[Markgway]

Stop coming on to me, Mark.

I've heard you like men coming on you. But that's not my bag. Sorry.

[Yi-Long]

Stop coming on to me, Mark.

I've heard you like men coming on you. But that's not my bag. Sorry.

You shouldn't believe everything Brad whispers into your ears to get you excited, Mark