Lupus 2009: Seal, MJ, Trick Daddy, AOL & Big Pharm

December 9th, 200912:47 pm @ Angela Odom

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sealheidiA wonderful article in the Mirror focuses on Seal’s life, marriage, and lupus. The quote from the article is not a head nod to the claimed tribal marks or whatever else was said of the scars on Seal’s face. In the Mirror.co.UK article Seal actually says he “contracted” lupus and didn’t know what was going on.

“I contracted lupus “I contracted lupus when I was 21 and it disfigured my face, I didn’t know what the hell was going on and no one was able to diagnose what was going on.

There is more. Seal goes on to talk about his life in a dysfunctional family, homeless and living on the streets, being adopted, his marriage and plans for his own children. Great article and I learned so much about Seal.

I’m so glad he has opened up about lupus and it is probably due in large part to all of those who have “come out”, if you will, about lupus — Trick Daddy, the articles about Michael Jackson and Lupus, J. Dilla and others. In fact, according to USA Today and AOL, lupus ranked No. 2 — right under H1N1 — in the list of Top 10 health searches on AOL for 2009.

With autoimmune disease on the rise, I’m not surprised. Additionally, ad campaigns bringing attention to lupus are encouraging people to get tested. I’m sure many are searching the web for signs and symptoms wondering if what they have felt for years, with no diagnosis, could be lupus. Truly, the question for 2009 is: Could I Have Lupus?

Yes, 2009 has been a year for lupus awareness on many levels. Stories have come out about a form of drug induced lupus — and other autoimmune diseases — caused by the Anti-HPV drug Gardasil in young girls. Birth control pills hit the news this year as possibly raising a woman’s risk of getting lupus. Trick Daddy’s coming out about his diagnosis with Discoid Lupus, young people are walking for lupus in the name of J. Dilla, and when Deepak Chopra and Arnie Klien talked about Michael Jackson and lupus, I think the web was set a fire with folks wanting to know more about lupus.

This year also marks a breakthrough in research for new drugs specifically for lupus. Human Genome Sciences (HGS) and its partner, GlaxoSmithKline PLC (GSK), hope to file for U.S. and European regulatory approval next year for the drug Benlysta, which could be on the market by the end of next year. Many analysts see the drug winning approval, especially given how few treatments are currently available for lupus.

If approved, the drug (Benlysta) will be the first treatment for lupus — a complex disease which causes the immune system to attack the body’s own tissue and organs — in 50 years.

Unfortunately, La Jolla Pharmaceutical Company’s product in development, Riquent® — designed to treat lupus renal disease by preventing or delaying renal flares — did not pan out. In February, La Jolla got the news its lupus treatment had failed. Now the company is working to close its doors, the expensive gamble did not pay off. This sad story is why many drug companies will not entertain the thought of developing new drugs for lupus. It is a costly endeavor and unfortunately, lupus is an elusive disease.

I am thankful for folks like Donna Jackson Nakazawa — who now has a blog — for her book The Autoimmune Epidemic. The more we know, the better prepared. Nakazawa has cast a spotlight on the world of autoimmune diseases and possible causes. It’s a must read book.

41Finally, this weekend while looking through photos in my MJ collection, I came across a few I really never paid much attention to. On closer inspection I realized what I saw in the photographs was not blush across the cheeks of Michael Jackson, he actually has a Malar rash or what is sometimes referred to as the “mark of the wolf.”

Before I was diagnosed with lupus, while at a party, a friend told me I was wearing too much blush. Of course I thought “oh my, did I go overboard?” When I got home later that night I realized it was a rash and assumed I was allergic to the makeup. In fact, without knowing it, I had the “mark of the wolf,” that Malar rash that appears across the nose and cheeks of people with lupus. Now I know the raised section of my cheeks is actually the area where this rash has appeared across my face, off and on, for several years. I thought it was acne, adult onset acne, make-up allergies, any and everything but lupus. Now I know better. For African Americans, it’s pretty hard to tell for some of us.

This has been a good year for lupus awareness. More people are aware and we may actually have a drug to treat this disease. I look forward to next year and hopefully, in the years to come, we will find a cure for lupus and other autoimmune diseases.