Interviews

A couple of interviews involving lupus came out this week.

The first one was at The Lupus Magazine, and featured Jenny. Here’s the link if you want to check it out – From Figure Skater to Opera Singer – The story of an inspirational Soprano. I don’t feel like I’m in a good position to comment regarding the interview, but I think it was really nice of them to give Jenny the opportunity to talk about her experiences and what she hopes to accomplish.

The other interview was Larry King’s interview with Lady Gaga. If you had told me a year ago that I would talking about Lady Gaga at all right now, I wouldn’t have believed you. I really didn’t know anything about her back then, other than I was too old and square to be interested in some new pop icon. This is an interesting and intelligent young woman. I’ve thought so ever since I saw her interview with Barbara Walters, and I enjoyed this interview with Larry King as well. Will her comments have any impact on lupus awareness? I don’t know. Maybe. We shouldn’t underestimate the power of pop culture. Lady Gaga spoke about lupus as an illness that should be taken very seriously. I don’t see how that can be a bad thing.

Hope Through Song

My wife has had this project on the back burner for some time now. She would like to start producing music that will inspire those with lupus and educate those who do not know how this chronic illness changes the lives of so many. As it says on the Hope Through Song website, “It is our goal to touch as many people as possible to let them know they are not alone and that there is hope after diagnosis.”

I’ve heard some of the tracks of the songs she’s been working on and I think it’s a great project.

Jon Stewart and the Lupus of News

I’m sure that many of you are aware that comedian Jon Stewart, in his ongoing feud with Fox News, recently referred to the network as “the lupus of news.” I don’t feel like creating any new links to this, so if you want to find out more, search for it.

There is so much about this topic that disturbs me, I’m not sure where to begin. Well, let’s start with the obvious one, that lupus is still considered by many to be a joke disease. Why? Well, I think people joke about things that don’t make sense to them and Lupus certainly doesn’t make much sense. Some people we know who have lupus have such a mild case that they appear to others as not being sick at all. On the other hand, someone we knew just lost their battle with lupus. I don’t know how to fix society’s perception. American society appears to be much more interested in being entertained than being educated.

When a society makes political decisions based on entertainers masquerading as journalists, the eventual conflict for ratings and viewership can only result in a political system forced to make decisions based on the amusement of the masses and the economy of YouTube viewership.

Every day that a person turns on the radio and listens to someone like Rush Limbaugh tell them how to be a real American or feels like they are politically involved because they watch The Daily Show, this economy of stupidity will continue to perpetuate itself until this country is reduced into neatly identified marketing groups of lemmings running blindly toward their edu-taining talking head of choice.

I wish I had some easy solution, but sanity is not very entertaining.

Lupus Research

Like many of you, I have a hard time keeping up with what’s going on in lupus research.

In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.