Rare Disease Day 2009, Feb 28




A collection of photos of patients living with a Rare Disease who participated in the EURORDIS 2008 photo competition. More: www.eurordis.org

My friend is being really annoying, and she’s hurting me even though she might not know it, how can I stop it?




My friend is being really irritating. She calls me practically every day, and she seems to think that her life is worse than anyone elses. I have a rare disease, and there are loads of people in the world that are starving to death. Her dad died last year, so we’re all sympathetic for that, but her mum does anything she wants, she has her own laptop with fast internet, a Wii, a Nintendo DS Lite, a Playstation, and heaps of things, even though they don’t have a lot of money, and they can’t really afford the school fees: she goes to a private school. She seeks attention, and she practically yelled out to the school that she likes the guy that I really, really like. I’ve liked him since early last year, and I still do, but the worst thing is that I was the first person she told and she didn’t seem to care that I like him and she won’t notice that I hate her. Please help me, I don’t know what to do!!!

I need to know if this is for real?




About a week ago, I asked about the size of one of my cats because she is very small, I gave the weight of my larger cat for comparison. This is one of my answers and was chosen as best:

This may seem counterintuitive but there is actually something wrong with your larger cat. It is commonly known that cats stop growing at around 7 months and normally around 4-5 pounds (3 for the runts) . It is extremely unusual for a cat to be 8.5 lbs by 7 months and indicates a rare disease known as Lionism. This is when a common house cat continues to grow for the entirety of its life eventually becoming 200-250 lbs and perfectly proportionate. These cats become extremely dangerous in their later years as they eventually become large enough to kill humans and their desire for food grows exponentially.

There are two courses of action you can take: the first is killing the larger cat before it grows too large and eats a family member.

The second is to try and stunt your cats growth by keeping him in a very confined environment such as a glass bottle to prevent him from growing to the point when he can harm humans. I would recommend the second as to keep the cat alive; you will have to sacrifice the cats proportion in this case as his body will eventually form into the same shape as the bottle.

Is that an actual disease? I Googled it, and nothing came up, but I can’t help but worry a little.

Why do I feel like such a whore?




I am very confused and I hate myself for it. Because of a rare disease I didn’t reach puberty until 10 months ago at age 23. My endo put me on birth control pills.

And I have a very high sex drive. I do not like married men. But why am I getting romantic and sexual feelings towards my friend’s husband? He’s not even my type! I’m not attracted to him! I don’t know if it’s because she talks about him all the time when we’re together or what but physically he’s not my type. I would never get involved nor flirt with a married man.

I’m wondering if crushes are unintentional? I don’t think I do! But I’ve been having unintentional thoughts and arousal about this man and I don’t know why and it’s pissing me off. Because it’s wrong to have feelings for a married man!

Help me figure this out!
1 hour ago – 4 days left to answer.
Additional Details
I live in a land full of married men and I just met a single guy my age but I’m taking it slow with him(seeing him weekly from another church at his church). We’re the only two single people in town! It sucks! We’re both 24.

also this married man is 40!
I also want to note that I don’t want what my friend has. That’s wrong too.

Is it a crush or just hormones? I hate it.

Interview with Prof. Peter CHANG at European Commission – Rare Disease Day 2009




Interview with health advisor of Taiwan health ministry on EU Affairs at the European Commission at the launch of the book ‘The Voice of 12000 patients’ published by EURORDIS on March 2 2009 in conjunction with Rare Disease Day.

Rare case of disease




showing everyone in the world about my disease that I have. watch the clip for best info about all u need to know. post a comment to let me know what you think

breaking dawn problem ?




these paragraph are from breaking dawn … i didnt get them … can u plz tell me in simple english wat jacob told charlie about bella condition ???

“It took him a minute to get his head together, and then he wanted to know what
was really going on with you, with the whole rare-disease thing. I told him that
you had been sick, but you were fine now—it was just that you’d had to change a
little bit in the process of getting better. He wanted to know what I meant by
366
‘change,’ and I told him that you looked a lot more like Esme now than you
looked like Renée.”
Edward hissed while I stared in horror; this was headed in a dangerous direction.
“After a few minutes, he asked, real quietly, if you turned into an animal, too. And
I said, ‘She wishes she was that cool!’” Jacob chuckled.
Rosalie made a noise of disgust.
“I started to tell him more about werewolves, but I didn’t even get the whole word
out—Charlie cut me off and said he’d ‘rather not know the specifics.’ Then he
asked if you’d known what you were getting yourself into when you married
Edward, and I said, ‘Sure, she’s known all about this for years, since she first
came to Forks.’ He didn’t like that very much. I let him rant till he got it out of his
system. After he got calmed down, he just wanted two things. He wanted to see
you, and I said it would be better if he gave me a head start to explain.”
I inhaled deeply. “What was the other thing he wanted?”
Jacob smiled. “You’ll like this. His main request is that he be told as little as
possible about all of this. If it’s not absolutely essential for him to know
something, then keep it to yourself. Need to know, only.”
I felt relief for the first time since Jacob had walked in. “I can handle that part.”
“Other than that, he’d just like to pretend things are normal.” Jacob’s smile
turned smug; he must suspect that I would be starting to feel the first faint
stirrings of gratitude about now.

Interview with Prof. Peter CHANG at European Commission – Rare Disease Day 2009




Interview with health advisor of Taiwan health ministry on EU Affairs at the European Commission at the launch of the book ‘The Voice of 12000 patients’ published by EURORDIS on March 2 2009 in conjunction with Rare Disease Day.

I’m looking for a recently advertised film?




I’m looking for the name of a film I saw the trailer for a couple of months ago on Apple’s trailers page. It features a young man with a rare disease (I can’t remember what, and that makes it even more difficult) that has left him in a wheelchair and without a lot of bodily control. He’s accompanied in the film by a friend without the disease. The film seemed to be indy, but with a big name or two attached to it. A line similar to “He only has _____, he’s not retarded” appears in the trailer. The disease sounds like cerebral palsy, but I can’t seem to find anything anywhere…Any help would be greatly appreciated!

I have a disease called Pellagra. Does anyone else on here have the same disease as me?




I was diagnosed with pellagra over a year ago. It is such a rare disease that it seems like I am the only person I know that has it or has even really heard of it. The doctor that diagnosed me with the disease only knew of it because he was from another country where it was more common. But in the united states it is very unseen. I would like to know if anyone else has it to.

If you have Pellagra, let me know. I hate feeling like the only person with this disease.

Also note that if you do not have this disease or do not know what it is please do not reply. THANK YOU!

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