[erenae1974]

I don't know if I just don't see it or if this is the way it is! I see all these commerccials for supporting cures for cancer, for a bunch of other health problems, and not that these aren't important but I never see any for lupus. Why is that? what can we do if anything to get the word out there more? Nobody I know really knows what it is except of course my family that lives with me & sees me every day.

 

[Maia]

There certainly are enough people with it... to make it a good cause for these types of things.
There are events sponsored by the Lupus Foundation of America, to raise
money but you don't see much TV coverage.

I think part of the issue (why people don't know about lupus) is
that pharmaceutical's don't come out with new drugs for lupus, so you don't
see any ads on TV for a new lupus medication so people in the general public aren't exposed to lupus in that way either. For some reason, newer medications don't get official FDA endorsement for use as a treatment for lupus. This is what happened with Lyrica and why there are now a lot of advertisement on TV about treating fibromyalagia with Lyrica.

 

[someonesfriend]

Here are some interesting statistics about lupus awareness...

* While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
* In a nationwide poll of 1,000 adults conducted for the Lupus Foundation of America, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
* In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
* While 65% of respondents to this survey claimed awareness of lupus, only 20% could offer accurate basic information about the disease.

(from http://www.lupus.org/webmodules/web.../new_newsroomreporters.aspx?a=247&z=60&page=2)

There was also something I read somewhere about lupus being more common than a bunch of much more well-known diseases combined, but I'm having trouble finding that quote now, will post it if I find it....

sf

edit -

Lupus is one of America's least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country's most prevalent medical problems.

(from http://www.lupusny.org/lupus.php)

 

[someonesfriend]

On a more hopeful note though - this video always makes me feel better about the state of lupus awareness and research: http://www.youtube.com/watch?v=AKPKsoJ7ibI&mode=related&search=

There are a lot of other good awareness videos on youtube too (and some by the LFA and ALR and other organizations about research that are really interesting), but this is one of my favorites

sf

 

[cispence98]

I agree that there should definately be more talk about Lupus, I did start seeing the commercials for Lyrica for fibro (which I am on) but honestly when I was diagnosed 2+ yrs ago I was like [email protected]?:? I had no clue what it was and I was just diagnosed, I remember getting a tiny pamphlet(sp) from the doctor and very little in terms of defining the disease it took my own research from libraries and internet and new rheum to get answers and I still think I get more from the books and internet than even the doctors.:wall:
I remember watching Americas next top model a few yrs ago and a girl with lupus was runner up and she educated the house about it, it was interesting to see because no one ever talks about it, I have watched ER for every yr since the pilot and I think they had one show that mentioned "check for lupus":what: thats it? Anyway I wear my purple bracelet that says someone you know has lupus and I have many butterfly rings to open discussions and bring awareness I even have a purple ribbon antenna topper and a magnet on my car that says find a cure for lupus, so I am trying to bring awareness myself, its just frustrating!!:sadwalk:

 

[erenae1974]

Thank you so much, SF, for sharing that video, it brought tears to my eyes and was something that I really needed to see. Thank you!

 

[someonesfriend]

Your welcome, I'm really glad you enjoyed it :flowery:

 

[peonyprincess]

Erenae,

I totally understand your frustration about commericals and everything that is out and not ever seeing anything concerning Lupus. Don't get me wrong, I am very pleased that other longterm and sometimes deadly illnesses receiving so much attention. So many times without all the attentin, there very well could have been poor outcomes without the attention being brought to them. I guess I would have thought that as many people are affected, that we would see more information from all sort of media outlets to bring attention to Lupus, but hopefully ne day that will change.

Nancy