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 Posted: Sun Apr 13, 2008 6:37 am
This is the thread for you to stop by and introduce yourself.
And since I'm starting it, I may as well kick it off.
I'm Akibe, the guild owner. I started this guild because my Grandad died of Motor Neurone Disease back in November 2006. While I had a lot of support from my friends, I found it very difficult to talk to them about it because none of them understood what I was going through, in fact, none of them knew what MND was.
I now only know one other person who knows someone suffering from MND, my vice-captain louM11. And I'm the only person she knows who has had to watch someone die of this horrible disease.
And there are many more diseases out there that aren't known about, or aren't common enough to receive decent funding.
So we've created this guild to raise awareness, and give support.
Oh, I guess I'd better add a bit more about me. I'm British, I love tea and cheese scones, and I make jewellery and cards.
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Posted: Sun Apr 13, 2008 11:44 am
Hello, I'm Lou and I'm the vice-captain of this guild. My boyfriend's father was diagnosed of MND almost 18 months ago now and he is still suffering through it. I know he's not a relative of mine but I find it very hard seeing my boyfriend and his family suffering through the affects of this horrible disease.
I was relieved to find Akibe had experienced someone suffering from this aswell, as I had someone to talk to about it and they knew what I was going on about.
Also, my granddad suffers from Parkinson's aswell as a list of other things, bless him. I don't get to see him that often and everytime I see him, it's a shock at how ill he looks.
I'm also British, I love drawing, animals and also jewellery wink
I hope to help others in becoming aware of these not so well known diseases and help support those who are suffering or know someone suffering from them.
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Posted: Sun Apr 13, 2008 12:08 pm
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Posted: Sun Apr 13, 2008 12:16 pm
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Posted: Sun Apr 13, 2008 2:07 pm
hello :3 i am malleus. i am american. i love art and music.
my gaian friend ramandia has Osteochondroma and Osteopetrosis.
due to these inter-related diseases, she cannot walk. she has surgeries constantly and is always in pain. she has been diagnosed with cancer before because of the exposure to xrays - too much leads to tumors. thankfully her tumor turned out to be bengin.
i know this isnt the same as knowing someone irl with a disease, but it still hurts to know that there are people going through this unbelievable amount of pain.
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Posted: Sun Apr 13, 2008 2:15 pm
Hey Mall!
Sorry to hear about your friend sad Those are definitely debilitating diseases and I've never heard of them, we'll be adding them to our magical list of doom.
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Posted: Sun Apr 13, 2008 2:17 pm
Hello Malleus! Welcome to the guild.
I'm ever so sorry to hear about your friend. I've never heard of those diseases but they sound horrible sad
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Posted: Sun Apr 13, 2008 2:19 pm
they do. i feel so lucky i dont have it. i dont think i would be able to tolerate the pain.
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Posted: Sun Apr 13, 2008 2:32 pm
The people who suffer from these diseases are very brave indeed.
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Posted: Sun Apr 13, 2008 2:34 pm
Same for me and MND Mall.
Lou- I know. I don't know where they find the strength, I'd really struggle to keep going day by day.
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Posted: Mon Apr 14, 2008 3:48 am
hey. I'm here to figure out a few deadly diseases, as my family member has one. do any you know what Anencephaly is?
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Posted: Mon Apr 14, 2008 4:07 am
Hi Pormogo!
It's not something I've heard of before, but having checked Wikipedia, it certainly sounds nasty. I'm sorry that it's affected one of your family members sad
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Posted: Tue Apr 15, 2008 5:10 pm
AkibeJosephus Hi Pormogo! It's not something I've heard of before, but having checked Wikipedia, it certainly sounds nasty. I'm sorry that it's affected one of your family members sad yeah, It's tough for my cousin... we do the best to help him with... living, basically.
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Posted: Wed Apr 16, 2008 2:42 am
I looked it up in Wikipedia but I didn't understand what it was sweatdrop
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Posted: Wed Apr 16, 2008 8:40 am
OKAY! So, my name is Maggie and my sister has MS (Multiple Sclerosis). I looked up some factoids about it:
"The term "multiple sclerosis" means "many scars." This is because multiple sclerosis is a chronic condition characterized by scars or lesions in the spinal cord and the brain.
People with multiple sclerosis are diagnosed in the prime of their lives, which adds to the fear and anxiety often felt in the wake of a diagnosis.
Multiple sclerosis is a central nervous system disease, meaning it affects the brain, the spinal cord and the optic nerve. Multiple sclerosis symptoms occur because the connections between the brain and the body's nerves are damaged. The effects of MS are often compared to the way faulty electrical wiring can lead lights to flicker. In a similar way, multiple sclerosis causes problems in signaling throughout the nervous system, which lead to symptoms such as tingling, numbness, blurred vision, and walking problems."
Also, my sis is in pain pretty much 24/7. They didn't mention that as a symptom. rolleyes
About ME: Maggie's not my real name, it's a nickname my grandpa gave me because my middle name is Margaret.
I was married last August on the 11th, 2007. It's actually not something I ever thought I would do. I never dreamed of my wedding day as a kid and months before I met my husband I had sworn off relationships altogether. Funny ol' world, isn't it? whee
Uh, I guess you can check my profile if you want more details, k? biggrin
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