By Wendy Singer                                                                                                                                                  It’s not always what you know, but who you know, or in this case – who is speaking out for you. Lupus has never had a superstar spokesperson, even though many A-listers either have lupus or are close to someone living with it. For example, rumor has it that the late great Michael Jackson had lupus.

The tides are changing. Celebrities are coming forward, speaking out and raising funds for lupus. A recent tweet from LupusLA (Lupus Los Angeles) broke the exciting news that pop star Toni Braxton and her sisters are starring in a new reality show called Braxton Family Values. With this news came Toni’s first public announcement that she is living with lupus. In a recent episode referred to as ‘The Lupus Episode’, LupusLA tweeted, “Get us out there Toni. Warriors, Unite!” and “We are so proud of Toni Braxton for being a brave, beautiful face of lupus.” Toni is educating about lupus, saying, “I’m a survivor and I’m here…This is what lupus looks like.” This is exactly what the lupus community needs. Toni hopes the show will teach her fans that she’s human. She explains that she has good days and bad days, and it sometimes gets challenging to do a lot of different things. She just tries to work hard to make sure that she stays healthy. Her goal is to be around for her sons, even though lupus can be debilitating at times.

The public outpouring doesn’t stop there! The Lupus Foundation of America  (LFA) National Board of Directors recently named musician and philanthropist Julian Lennon as Global Ambassador. The aim of this role is to elevate lupus on the world’s health agenda, and increase awareness of the needs of the more than 5 million people living with lupus and their families around the world. Lennon will support public awareness initiatives to observe World Lupus Day and Lupus Awareness Month, help raise funds for lupus research, including the Lucy Vodden Research Grant Award, which was established last year by the LFA and Julian Lennon. The grant is named in memory of Lucy Vodden, Lennon’s childhood friend who lost her battle with lupus in 2009 at the age of 46. Lucy was the subject of a drawing Lennon created which inspired his father, John, to write the classic Beatles song, “Lucy in the Sky with Diamonds.” Lennon is thrilled to take on this honor and tribute to his friend. He looks forward to working with the LFA on hehalf of all individuals living with lupus around the world.

 

“Julian Lennon’s efforts will go a long way to draw global attention and resources to lupus, a disease which remains under-recognized and under-appreciated,” said Sandra C. Raymond, President and CEO, LFA.

Other celebrities living with lupus and pitching in, such as British singer Seal who also has lupus, and performed at Lupus LA’s renowned Orange Ball. Held each spring, this gala raises hundreds of thousands of dollars to support Lupus LA’s awareness and education programs and groundbreaking research through the Lupus Research Institute. The celebrity-hosted night features live entertainment and honors various individuals with the “Loop Award,” given each year in honor of Lupus LA’s founder Daniel J. Wallace, MD. This year The Orange Ball honored Paula Abdul.

This type of publicity can be comforting to those of us living with lupus, and goes a long way in uniting our community. I wonder if it allows us to feel more confident to talk about it, and so I throw out the same question LupusLA recently tweeted – “Do you feel more open about talking about lupus now that Toni Braxton is sharing her story publicly?” I sure hope so, for e have nothing to hide.

References

Lupus Foundation of America Inc. News and Information

http://www.wavenewspapers.com/news/local/west-edition/Toni-Braxton-and-her-sisters-air-their-laundry-on-new-reality-show-119377074.html

http://www.lupusla.org/events/orange-ball/2011/