08-25-2006, 11:15 PM
Hi All,

Angie mentioned this on an earlier post about the LUPUS FOUNDATION OF AMERICA....will be on TV, Thursday - August 31st on the Good Morning America Show. PLEASE SHARE THIS WITH AS MANY PEOPLE AS YOU CAN.

Much love,

Great News from the Lupus Foundation of America, Inc.

Public awareness of lupus will get a giant boost on Thursday, August 31 when representatives of the Lupus Foundation of America appear on ABC's Good Morning America between 8:30 a.m. 9:00 a.m. Eastern Time. Dr. Susan Manzi, a member of the LFA Medical-Scientific Advisory Council, will present an overview of the medical aspects of lupus. Kelly Drury, a member of the LFA, Illinois Chapter Board of Directors and a national spokesperson for the LFA, will discuss her personal case of lupus and explain to GMA's nearly six million viewers the serious impact lupus can have on individuals and families. This is an excellent opportunity to bring urgently needed national attention to lupus. Please share this message with others and encourage them to watch Good Morning America next Thursday, August 31 at 8:30 a.m. Eastern.

08-28-2006, 01:24 AM
hi everyone, it's great to hear us lupies are experiencing such publicity.
However, due to the fact that i'm all the way in south africa, unfortunatelyi a am not be able to recieve american channels
So i was wondering if anyone was planning on recording it and perhaps put it on the site as a link for all the other lupies that won't recieve the show?


08-28-2006, 08:31 AM
I looked on ABC's website and it seems like they have video clips from today's stories. Just click on the link "VIDEO" in red next to the topic you wish to see and you can watch the clip. I'm assuming that on Thursday there will be a clip for the Lupus story.
The website link for Good Morning America is:


Hope this helps!


08-29-2006, 06:08 AM
Does anyone know what this lady's 'position' is on lupus? If she goes on and says, "lupus is like this -xyz - but people with SLE can work and lead normal lives" ... this could do more harm than good.

I'm not sure I should tip my friends to watch it to understand, or not.

08-29-2006, 07:15 AM
Dr. Susan Manzi is the co- director of the lupus center of excellence at Magee's women's hospital in Pittsburgh Pennsylvania. She cares for patients and I hope she will be our advocate and let others know we can lead normal lives but sometimes we can be really sick too and not lead normal lives like others. Below is a little profile on her. I know there are a few people that have posted that have been to the lupus center in Pittsburgh. Maybe they can give more insite on her. As for the other person I do not know anything about them.


08-31-2006, 07:04 AM
I saw it!!!!!! It was short but I thought well done.

08-31-2006, 08:38 AM
I thought that the segment was great.

08-31-2006, 10:42 AM
I unfortunately missed it but was able to read a bit from the segment. Did they speak as our lupus advocate?? :D

08-31-2006, 11:45 AM
Yes definately I thought so butterfly. It was so short there was little time for anything but a bit of a personal story and a great plug for more research for lupus. It really was about needed awareness and research. "Lupus needs a Michael J. Fox" to bring attention to this disease.

08-31-2006, 12:10 PM
I thought it had good info... What I thought was rubbish was that their stupid segment on ice cream sundaes got more time than a life threatening illness... That is BS!!!!

08-31-2006, 12:17 PM
It was good. Short, but sweet... got in some important points esp. that lupus patients are like snowflakes, no two are alike. I also like their slogan, "someone you know has lupus." Drives the point home that there's a need for everyone to become more acquainted with the illness. Although the segment was short, it will probably lead to more in-depth stories in the print and tv news.

08-31-2006, 02:58 PM
I thought it was well done and quite informative, given the short period of time that they allocated to the subject.
I have to say that, like Solesinger noted, I was a bit miffed about the extensive time given to ice cream sundaes and the short blurp given to a chronic and sometimes fatal disease.
But, we got national air time with good information! Guess we have to take baby steps!!


08-31-2006, 03:30 PM
I thought it was a waste of time! I got up early to see it ...and that's not easy right now ...and like you all said ...they spent more time on ice cream than on something important like Lupus. The young girl gave the impression it's a minor annoyance which trivializes it in the minds of the general public;and the doctor was not allowed to say anything meaningful or interesting. GMA did not do a good job in my opinion.

08-31-2006, 03:47 PM
I have been trying to show my sister the interview from this morning but I can't find it. ---Brain Fog----

08-31-2006, 03:59 PM
Yes, the VERY short segment included SOME useful information. But, I was disappointed that they didnt clearly explain what lupus really is. If the purpose of the clip was to educate the public about it and to bring awareness to it, I think they should've included more facts about it. They included the statistics of how many have it, of who gets it. But they didnt discuss what it is (autoimmune disease), symptoms, what can be affected (organ systems). They spent more time with that girl's personal story. :roll: They even said that everyone knows someone who has lupus. But noone really knows what lupus is... :?:

09-01-2006, 07:49 AM
Yes; we are in need of an advocate/spokesperson with national capabilities. It seems as if almost all other diseases have a national spokesperson and/or an advocate, but for some reason, no one is willing to step out there to be our advocate. If everyone knows someone with Lupus, then it stands to reason to believe that someone with national capabilities to communicate the truth about this disease is out there somewhere, huh?
Where are you? We need your help in telling THE WORLD the truth about this illness!!!! We are all doing the best that we can, but we need YOU to be our advocate!! Step up and be heard, for us and for yourself!!

That's my commentary for this morning!!

Peace and Blessings everyone

09-01-2006, 07:56 AM
Honestly, that was why I pushed so hard to stay doing what I was doing... I think after I was diagnosed I tried to push the band even harder... Which was probably not so good... I mean, we have James Garner and Howie whathisname from the Backstreet Boys... But, neither of them HAVE Lupus... So, I don't think it's the same as watching Michael J. Fox, this man who has won over virtually the whole world, stuggle with such a terrible illness...

Saysusie!! You and me!! Let's go make a CD become HUGELY popular and then let the world know what Lupus REALLY is!!! :D:D:D:D:D:D:D

09-01-2006, 08:36 AM
I AM SOOOOOOOOO ON BOARD WITH THAT IDEA...Especially if we are allowed to use some posts on this forum as some of our lyrics. Especially some of the ones in "You Know You Have Lupus IF..."!!!! :D :D :lol: :D :lol:

Peace and Blessings

09-01-2006, 09:27 AM
ALRIGHT!!!! WOOOO HOOOOOO!!!!!!!!!!!!!!!!

09-01-2006, 05:59 PM
If you would like to see the Good Morning America spot on television, see the link below. I finally felt like someone gave me a voice - it was great to watch - check out the link which is from the Centre for Excellence itself.


I was very relieved to see how much better this spot was compared with previous spots on other shows that I felt didn't represent us as well.

09-02-2006, 06:29 AM
How can you think that was a good segment? It glossed over everything ....didn't even give symptoms or such for anyone experiencing them and not knowing ...it gave no useful info on what to do or who to see if you suspect lupus and the girl who represented lupus patients didn't represent a typical patient in my opinion ...show someone in the midst of a flare with swelling and bags and rashes, looking like she's just been runover with a truck and show people what it's REALLY all about!

09-02-2006, 09:34 AM
I did think it was great. They didn't have much time and Dr. Manzi interrupted Diane Sawyer at the end to ensure to drive the point home that people are dying from this disease and that it was serious.

You have to understand that some of us feel she did represent us. I am an attractive 30 year old woman that even in a flare, I certainly don't appear to look as sick as I feel - and that's a common complaint in my support group that just because we don't look sick, that doesn't mean we aren't. The actress was sweet, had hope and was upbeat - she balanced the serious comments the doctor made about the disease. Do you notice they always put the "cute" kids in the Miracle network ads etc...

I felt she represented me very well. Dr. Manzi also said "she is very lucky as people die from this disease" and she drove home how serious it was.

They only had a few minutes - people have difficulty discribing this disease in an hour long seminar speech, I've seen it!!! Here, they had to grab the public attention quickly by bringing in someone young and beautiful; two, associate the disease with other better known illnesses (which they did) and three, give a very brief understanding that it is a baffling disease that needs more attention and funding. They accomplished all three. They weren't trying to make the world understand it, they were trying to at least get them interested...

If you don't think it was effective, just ask both Lupus Foundation of America, and Lupus CAnada as to how many more hits their websites received since then!!! I thought it was great. They only had a few minutes and they really made the most of what little time they had.

A small spot is better than none.

09-02-2006, 10:19 AM
How can you think that was a good segment? It glossed over everything ....didn't even give symptoms or such for anyone experiencing them and not knowing ...it gave no useful info on what to do or who to see if you suspect lupus and the girl who represented lupus patients didn't represent a typical patient in my opinion ...show someone in the midst of a flare with swelling and bags and rashes, looking like she's just been runover with a truck and show people what it's REALLY all about!

I don't know about that... One of the biggest complaints most people with Lupus have is that we don't LOOK sick, so no one really knows how sick we are! That's one of the most frustrating things... The problem though, was that they didn't really spend a lot of time on how serious it really is even though we DON'T look sick... It had some useful information, yes... But, not nearly enough.

09-02-2006, 10:47 AM
You are absolutely right, I do wish they were given at least a 10 minute slot but 5 minutes is pretty normal to give a disease on a news or talk show. I do wish it was longer. But given the time they had, they at least got the word out there.

It was better than when we were represented on the Today show in the spring and all is sounded like was that we were just "really really tired" - that one annoyed me a lot because there is so much more to it than being tired. This time, they at least had a professional there who spoke well, she did try to get as much information as possible in there and then the human element was great.

I often feel like people don't get - there was a great article that the BC Lupus Society put in their newsletter saying "Well you don't look sick" - it was such a great article that I scanned it and e-mailed it to everyone!!! A very frustrating feature of Lupus. Not to mention, I like to put myself together nicely so that I don't look how I feel - it brings me up a little to do that.

But, in the end, it got the word "Lupus" out there that much more. Millions of people watch the show, so that's just a little more knowledge than they had before, and next time, maybe they'll have even more!

09-02-2006, 04:22 PM
Okay, I've read through all the posts and given this topic a lot of thought.
So bear with me on this subject.

First and foremost, I believe it is important to remember this one cardinal rule in marketing/advertising: REPITION IS THE MOTHER OF MARKETING SUCCESS!! Because I have worked for one of the worlds largest companies, and know what goes behind bringing a "product" to market, I viewed the Good Morning America piece as very well done.

1). How many times did you hear the word lupus in that piece? I can promise you this, more than all the other stations combined in 5 years time! As mentioned before, this television program has one of the largest viewing audiences of "WOMEN" in the United States, etc.

2). To have an "authority" on Lupus research to "air" our cause was absolutely the single most important and credible place to set this marketing foundation. Dr. Manci did mention the seriousness of this disease, that it is and can be fatal. The fact that the young lady had undergone CHEMO was, I thought, very powerful. The only other disease you immediately associate chemo with is ......cancer. To see that young lady looking so vibrant, I felt, was a great expression of "hope", that there can be periods of "well being" with this disease. I think Dr. Manci did an excellent job of stating how important it is for our disease to receive much more funding and research. Dr. Lahita (sp?), professor of New York Medical University, was assigned to study lupus for 3 months, he spent 11 YEARS researching this disease.

3). I do take a different view in regards to the statement "that we need a Michael J. Fox" to bring this disease to greater prominence. One of the greatest supporters of the Lupus Foundation is Woody Johnson, of the world wide known company "Johnson and Johnson", his daughter suffers from lupus. He contributes because he KNOWS how debilitating this disease is, and he KNOWS because he is aware! His support makes lupus research a reality, not a discussion. Remember, research follows the money - not the stars.

Yes, Michael J. Fox gives Parkinson's a "face" to recognize with that disease, as did Jerry Lewis for Muscular Dystrophy; as well as Elizabeth Taylor for Aids, and most recently Patti LaBelle for Diabetes. I challenge you with this thought, who asked them to be the face for that "cause"? it's people like you and me, the "behind the scenes" people, like us! Jerry Lewis, didn't suffer from Muscular Dystrophy - but he has done the single largest "campaign" for any disease. The Muscular Dystrophy Association is 100% privately funded, and takes no money from the govenment in grants or subsidies. It was a grass roots effort. The Muscular Dystrophy Association was started in 1950....Jerry Lewis did the first ever telethon of it's kind in 1966!! It took that organization 16 years to get to the airwaves. MDA was started by MDA patients, parents of children with MDA, and a medical researcher/scientest. It has taken 56 years for this organization to reach its' prominence in the private medical research arena. 56 years, that's a long road of baby steps.

I will agree that a "famous" face gets the disease recognized, perhaps more quickly than "Joe Schmo", and gets a lot more ear-time in congress. It's fascinating to see someone "famous" make a pitch, especially if they suffer from the disease and can give that disease an identifiable "face". At the end of the day, I think it will have to be up to US to be the face of lupus!! That's right, you and me.

4). Consider this fact, a 30-second airtime commercial/ad on television can cost as much as $400,000 (that's not even superbowl time). I agree that our disease needs to be made more "presentable" to the public, and I don't mean "dress it up"; but make the best use of time as possible. If we want to make a difference in how lupus is presented to the public. As you are aware; not all diseases get the same "equal opportunity" as other diseases. Others have been in the game a lot longer,(Diabetes, MDA, Breast Cancer, etc.). Dr. Manci is correct when she said on average it takes approximately 3-4 years for someone to be accurately diagnosed with Lupus. There is not one single test to define lupus. She did mention that lupus is one of the hardest diseases to diagnose because it does mimic so many other diseases; and I thought it was brilliant that she compared each lupus patient as a "snowflake", which I felt, was a very simplistic and yet very understandable comparison on how varied the symptoms can be.

I would love to see a "special" aired on television; on perhaps a Dateline or 60 minutes, where you can get 15 minutes to 30 minutes of air time and a wider spectrum of viewers. I would to make this challenge to each of you, who are interested in pushing this subject further, and make your local stations / networks know that this is something you want to hear more about!!

All in all, I believe that they made good use of the airtime. If you want to see more, make some noise!!! Write, call, or e-mail the networks and let them know; a). you thought that was a very interesting story and you would like to see more of that subject on their show. b). the saying is true, "the squeky wheel, get's the oil"...so squek away my friends.

When our suffering can be made palpable to ears of the community, to the hearts of those in medicine; and to the minds of those in research and science; then we will know we've started to make a difference for those who will live with this disease in the future; perhaps with more answers; greater treatments...and yes, perhaps a cure. Remember, cancer and cure were never spoken in the same sentence 30 years ago.....but that's not the case today. One person is all it takes to make a difference!!!!!!! And another, and another, and another!

Much love,

p.s. can you tell I'm a little "on fire" about this subject (smile)

09-02-2006, 05:29 PM

Well, we have James Garner and that guy from the backstreet boys, too... So why are we still in the dark? Maybe if Seal would come forward and talk about Lupus? Who knows...

I just know it's frustrating... And I wasn't so upset about the piece as much as I was upset at the way that they made it seem like they tried to squeeze lupus in between their all important ice cream segment...

09-02-2006, 05:36 PM
Well, after all; we DO LOVE OUR ICE CREAM....and it's so much more pleasnt to talk about (smile). I do agree, the ice cream did get a lot of time. Sponsors - make a huge contribution to the operating budgets of these shows.

Thanks for letting me "rant" about this subject. It's 90 degrees here in Seattle today - and I'm outta here to get some ICE CREAM (smile).

Much love,

09-02-2006, 06:00 PM
YAY Brown Eyed Girl,

Boy did you ever hit the nail right on the head. What a great post and I hope everyone reads it beginning to end. I agree completely and am thrilled you wrote that post and so well written!

I have a question, Seal and Lupus? Does he have it or know someone who does? I did not know.


09-02-2006, 06:17 PM
Thank you for the kind words, I think if enough of us care enough to get something done - change will happen.

As far as Seal is concerned, from what I understand - he suffered Discoid Lupus as a child. I am not certain of his current status. As far as Howie from the Back Street Boys, I know that he does a lot of work with the Lupus Foundation (I believe).

I appreciated reading all your post on this topic. You're right - a little is better than none.

Hope you're doing well.

Much love,

09-02-2006, 06:18 PM
The scars on his face came from Lupus... But the way it is portrayed in the press, it's just something that goes away... it's actually incredibly annoying...

09-02-2006, 06:22 PM
I find him so fascinating, he is so interesting to listen to. He has a good head on his shoulders and he looks at life with the "half full" glass. He has certainly made the best of his life....and the man can sing!!

Thanks Solesinger for the info. I'm runnin' out for some of that ICE CREAM they talked about on GMA. (smile).

Much love,

09-02-2006, 09:28 PM
That's very interesting about Seal. I had no idea. I do wonder why he is not more outspoken about the disease. I've always enjoyed his music and actually met him once about 8 years ago when he was working out in a gym.

As for Howie Dorough, I have met him a few times when he came to town with the Backstreet Boys - he was always really good at contacting local Lupus chapters and having them send people down to spread the word about Lupus and to meet the group. They were all terrific and knew a lot about Lupus. He has his own Lupus Foundation and they do a fair amount of fundraising, especially when the Backstreet Boys were really big.

Go figure, I met both! Well, I hope Seal is doing well now.

I know, all the talk about ice cream, yum!

09-02-2006, 09:38 PM
IT has been quite a few years back, and he was on either the biograpy channel or one of the documentary channels. He talked about how he really struggled with it as a young boy/man. He speaks so eloquently, I could listen to him talk all day. And you know the man has got his act together; when he is in a relationship with Heidi Klum and they're working or just had their 3rd (?) child.

Signing off for the night

Talk to you soon.

Much love,

p.s. I'm so pooped out - I think I'd flunk a first grade spelling bee today.

09-03-2006, 07:09 AM
Well now maybe I'm just cranky but ...I seem to be in the minority about that GMA segment. I think putting "Barbie" on there as representative of a lupus patient doesn't cut it. If you want people to sit up and take notice you need to show what a SICK patient looks like and list the sytmptom on the screen so someone watching who is undiagnosed might sit up and say "Hey that sounds just like me" and they can go to their doctor and check it out. Anyone home and sick and fighting this isn't going to recognize a perky cute little thing as having the same thing that's making them puffy and swollen and rashy and tired and sore. Sorry but they just aren't. So she had chemo ...it still didn't portray the devastation and huge impact living with lupus has on people. She didn't look like it was any great effort to manage her disease ...we need to show that this is a life altering disease not an inconvenience. Anyway ....maybe I'm just cranky :-) or maybe this is the prednisone talking but I think that GMA lost a great opportunity to get the word out.

09-03-2006, 11:52 AM
Kellie Martin from Life Goes On and ER has been very out spoken about Lupus. She lost her younger sister to Lupus because the doctors didn't diagnosis it in time. From the end of the article below it sounds like the news people want to shorten the story or not tell it the way Kellie wants it told - maybe that's why it hasn't made major TV or magazine articles.


09-03-2006, 12:21 PM
Thanks for sharing that article with us.

09-03-2006, 12:25 PM
THANK YOU BAMA, that was so thoughtful of you to share that clip. I had never seen it before.

Mrs. Murdena, I don't know when was the last time you had chemo; but I'm going through it now - and believe me when I say, going on TV to make a pitch about lupus while I'm going through this rates right up there with ripping out my fingernails first thing in the mornin'...and when my rashes are so bad I can't wear clothes - well, I think we should ALL be thankful noone has to see that!

I respect and understand your point. You saw that article and thought it was ridiculous; I chose to view it through hopeful eyes; you and I both know, she wasn't looking all that pretty when she was vomitting in the toilet, or crying because every movement hurts if you even blow on it.
Having lost a brother to Lymphosarcoma and being all too familiar with chemo myself; I fully understood - that any disease that requires chemo is not a "slight inconvenience" and as I mentioned earlier. Even 30 years ago cancer and cure were never spoken in the same sentence - but they are today; and if you look back through the years, not one grossly sick human being had to go on display to make that happen.

That's the beauty of having an opinion, we're all entitled. The best part about living in a country where we are free to do so, is even more reason to celebrate!! If I may say it again, as I did in the earlier post; if you want to see something change - make some noise. I'll be standing right next to you !!

Much love,