[Okie]

Hi Everyone
I just watched the National News on CTV(Toronto) at 11p.m.and saw a news report on lupus. They think they have found the gene that causes lupus and reported that this could be the big break through in developing better drugs and possibly a cure in the very near future. This gene was discovered in Oklahoma and was reported on the Canadian National news to-night.
They showed a young girl of 18 who has lupus and suffers with joint pain and fatigue. The news broadcast gave alot of information about lupus which will raise much more awareness of this disease.It was quite an upbeat news story which can give us all some hope!!! Finally some good news to share!!!
Regards
Okie

 

[Clare.T]

There's so much work going on into the genetics it is really exciting but I think not holding breath is a good idea. There are so many genes already identified.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080118/lupus_080118/20080120?hub=Health

I am feeling quite pleased with myself because a bell rang in this ol' brain and lo! Melissa who is featured in the article used to post here as edcdancer

http://www.thelupussite.com/forum/member.php?u=30592


Cheers
Clare

 

[Roseanne]

This has just hit the UK news stands too...

http://news.bbc.co.uk/1/hi/health/7196083.stm

This is great news - I was always worried about the genetic component and whether it would affect my children, and now it looks like they are on the way to being able to diagnose Lupus much more quickly. Hope at last!

R

 

[Clare.T]

Gosh, that is a really startling picture of a lupus skin lesion ! ( BBC site ) I have always thought lupus skin was the best photo publicity for lupus, which is otherwise invisible, but that takes even me aback.
They could have used a really obvious typical butterfly rash, not something that looks like fluorescent bubonic plague.

I bet that they'll eventually divide lupus up into several different named diseases when they find new antibodies and sort out the genetics.


Clare

 

[DDR]

Reading your post, Okie, I began to cry! I'll try not to get my hopes up but I am absolutely thrilled!!!!:rotfl: Some hope at last and that's a good feeling to have for a change!

 

[Katharine]

Yikes yes, that photo looks like an alien life form!

Anyway, let's hope that with all the work being done something is discovered soon for all of us and those to come.

Katharine

 

[Roseanne]

The Professor who authored the study is looking for further volunteers to help - I have sent him an email and would encourage anyone else in London to do the same if you are comfortable with it...I have his email if anyone wants it (not sure I am allowed to post it directly in this post!).

R

 

[Clare.T]

Roseanne

You can put his email addy here if it is in the public domaine - ie if any of us could find it by looking for it. If you have it privately then ask him if he would like it put on the board.


Clare

 

[Roseanne]

Thanks Clare - I found it on the Imperial College website, so it is public...

[email protected]

Also if you look up the article itself, it gives you the address of the group that authored the study:

[email protected]

R

 

[Clare.T]

Thanks Roseanne I think I will mail him.

I have emailed the BBC saying how stories about lupus are appreciated but pointing out that the typical rash is the malar or butterfly, symbolic of SLE, giving an url of a pic of it & asking why on earth they have put that unhelpful and unsuitable one and exactly what sort it's supposed to be.

I even wonder if it is lupus at all.
Other sorts of skin disease are called 'lupus something' going back to the time when they couldn't distinguish between similar looking sorts of skin troubles so they called everything that looked the same 'lupus something'. There's a sort of tubercular skin problem named "lupus I forget what"

I don't really expect to hear from them.

Cheers
Clare

 

[sushi]

:yahoo: :excited: this is some exiting news

i hope they continue to research lupus and so many other diseases.

and find a cure someday.

thank you shirley for this post:woohoo:

 

[Joandublin]

Thanks Shirley

I had posted about this in December

http://www.thelupussite.com/forum/showthread.php?t=67656

And here is another link with a bit more info for those up to reading it!

http://www.medicalnewstoday.com/articles/90490.php

At the very least it would be wonderful if they discovered a way to diagnose this disease easily without people having to go through misery for years:worried:

Luv n stuff
Joan:rose:

 

[BigSis]

I saw a tiny piece about this in the press. I hope they expand on it later.

I'm not holding my breath but it is great news. I worry of course for my sons and nieces since both I and my sister are lupies. Even if it only means sceening and early diagnosis before damage is done its a good thing.

Bizarre picture though looked like a bluebottle.

 

[karen.w.]

Thank you for posting shirley

It's certainly encouraging :yahoo: have to keep our fingers & toes crosssed!!
thanks to everyone for the other links too

take care..karen x

 

[LoopyLoo]

I saw this first thing on the BBC and thought the same as some of you - where the gibbens did they get that pic of lupus!! Even hubby commented on it, although he did say he always thought I was a bit of a rougue gene :lol:

From a personal perspective - I had some friends email me this and a girl at work cut it out the Daily Mail for me. She handed it to me at lunch while others were sitting and they asked me about it. I explained what it was and that I had Lupus.

I was dead chuffed because it means peeps are taking notice.

Let's keep hoping.

Hugz,

Pam xxx

 

[halfpintfl]

Hi all, I would just like to tell you that the link that Roseanne put in her post, at the bottom it has a place where you can e=mail the article to a friend, which is a very great thing for those of us that live here in the states.
I just had it e-mailed to my Aunt. If any thing else, of this great importance comes up, could Roseanne, or someone else in the UK print the link. I thank you for the info, what
great news.:wink2: ​

 

[halfpintfl]

Hi Clare, about that picture, maybe if they showed that it would wake people up a lot faster than a familiar picture of a butterfly that they identify from and old Lupus ledgen. Also, they are talking about discovering a new gene, and that is a gene. But, you are right in that it is ugly!!!

 

[someonesfriend]

Thanks Shirley

I had posted about this in December

http://www.thelupussite.com/forum/showthread.php?t=67656

Yeah I'm wondering why this is just becoming big news now, if it was first released in December?

Either way, definitely awesome...*booksmarks links like crazy* :hehe:

edit - okay the oklahoma study is newer, its the imperial college one that was in december...

 

[someonesfriend]

If anyone is interested in the super technical details, heres the article published today in the New England Journal of Medicine: http://content.nejm.org/cgi/content/full/NEJMoa0707865

and an editorial on it:
http://content.nejm.org/cgi/content/full/NEJMe0800096v1

(all the ones in Nature Genetics require signing in, so not bothering to post those)

the coolest thing though is seeing headlines about SLE on multiple major scientific journal websites...

 

[wheeliefab]

Lupus UK will follow up on this

I contacted Lupus UK to try find out how you can become a volunteer. They have replied "There will be a piece in the next issue of News & Views on the research and it will ask for volunteers and give the contact details".