Posts Tagged ‘Lupus’
If you have been to http://katinaraestapleton.com in the last day or so, you might have noticed something a little different. My blog “Song-in-Action” has been retired and replaced by my new blog “From the Desk of KRSProf.”
A few weeks ago, I was looking at my Song-in-Action posts and realized two things – the first is that I wasn’t blogging very regularly and when I did blog, the posts were about lupus. That begged the question, why were there so many blogs about lupus on my blog about music and social activism? The answer seemed really clear; I have had a change of focus. So I rolled with it and made two major adjustments:
- I finally created a freestanding lupus blog so that I would stop hijacking the blog on my http://katinaraestapleton.com with lupus posts! The new blog is called Butterfly Lessons (http://butterflylessons.com) and officially launches on Sept. 13, 2010 in honor of Invisible Illness Week (http://invisibleillnessweek.com/). The Butterfly Lessons blog is all about living a fabulous life with lupus. I hope everyone in the lupus community enjoys it and is inspired to live their life to the fullest. You can also follow my Butterfly Lessons tweets (as @Butterflylesson).
- I refocused the main blog on http://katinaraestapleton.com into a more eclectic blog that reflects my tendency to be interested in all sorts of things. Look out for From the Desk of KRSPRof to have posts on music, pop culture, politics, fashion, and anything else that strikes my fancy.
Hope you enjoy the changes,
One of my favorite things is to use this blog to call attention to causes supported by musicians. Two great causes – the Lupus Foundation of America, DMV chapter and Gifts for the Homeless were supported by examples of Song-in-Action last Thursday.
Lalah for Lupus
In Prince George’s county, I was excited to be invited to listen to the sounds of Lala Hathaway at a Lupus concert/fundraiser sponsored by the Ashleigh Group. Before Lala’s set, Edie Aultmon and another lupus survivor gave testimonies about how their lives have been changed by the auto-immune disorder that affects more than 1.5 million people in the United States. Watch Edie below in Chasing Butterflies.
Kassandra Kearse, Development Manager for the Lupus Foundation – DMV was in the house as well. If you would like to host a concert for lupus, contact Kassandra.
Lawyers Band Together
Across the border, DMV’s law firms put down their subpoenas and picked up their instruments at the Black Cat for the 7th Annual Banding Together Battle of the Law Firm Bands to raise funds for Gifts for the Homeless. GFTH is a local non-profit supported by the DC metro legal community that provides clothing donations to the area’s homeless.
This year Sutherland Comfort (representing Sutherland Asbill & Brennan) was the winning band, a title brought home by raising the most funds for GFTH – $29,000.
Who is Sutherland Comfort?
- Financial Services Associate Naseem Nixon (lead singer)
- Litigation Associate Wilson G. Barmeyer (bass guitar)
- Tax Associate Daniel M. Buchner (guitar)
- Financial Services Partner W. Thomas Conner (guitar)
- Océ staff member Chris Lewis (drums).
- Recruiting Assistant Rachael K. Saltzman (back-up vocals)
- Paralegal Amanda Hubert (back-up vocals)
P.S. If you know of any DMV musicians raising funds or awareness for local causes email me so that I can feature them in the Song-in-Action blog.
This week one of my twitter-friends sent me a link to music-related Lupus story. I was intrigued. Lady Gaga might have Lupus? Say it isn’t so. As anyone with Lupus can tell you, having Lupus sucks. I was very sad to hear that the singer might be battling with the disease. So I clicked the link to Lady Gaga’s interview on Larry King to listen for myself.
Larry gets right to it. Do you have Lupus? Sort-of, maybe, maybe not, no?
According to Lady Gaga, she was tested for lupus, doesn’t show any signs, is “boderline positive, ” but does not have lupus. What does that mean? Lady Gaga doesn’t appear to have Lupus right now, but may or may not develop it later.
The Lupus Foundation of America has used Lady Gaga’s story to education the public about the nature of the disease (read here) and the diagnosis process.
From the LFA blog:
“There are many challenges in confirming whether a person has lupus. Lupus symptoms can be unclear, can come and go, and can change over time. It may take months or even years for doctors to piece together evolving symptoms to accurately diagnose lupus. And the symptoms may be related to another condition entirely. . . The anti-nuclear antibody (ANA) test is used as a screening test for lupus. We know that 95 percent of people with lupus have a positive ANA. Therefore, if a person has symptoms of systemic lupus but their ANA test is negative, that’s generally regarded as pretty good evidence against lupus being the explanation for the symptoms they are having.
On the other hand, if the ANA test comes back positive, that IS NOT proof of lupus. The positive ANA is only an indicator; it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions. In fact, many people may have positive lupus tests-particularly the anti-nuclear antibody test-and yet they do NOT have the disease. . . .”
For me, Lady Gaga’s “Lupus story” is both a cautionary tale about celebrity and a moment of opportunity to see a musician raise public awareness for a disease.
When I was watching the video, my first thought was why is Larry intruding into Lady Gaga’s personal business like that? Was she ready to bare her health status and her family’s history to the entire world? You only have to Google “Lady Gaga Lupus” to see how this story spread around the Internet. But I don’t know if Lady Gaga was offended since she seemed genuinely concerned that her fans were concerned about her health.
So on the one hand, her celebrity status has effectively given everyone liberty to speculate about her very private health issues. On the other hand, she seems ok with it and this provides a platform for her name-recognition to provide a spot-light on the issue of lupus.
The whole situation reminds me of when Christina Applegate was diagnosed with breast cancer. She went on to be a breast cancer advocate, sharing deeply personal information to the public in order to raise awareness of the disease (like talking about having a double mastectomy).
It also reminds me of two celebrities that do have lupus and have used their status to raise awareness of the disease. What’s really interesting to me is that they are both male. This stands out, because while Lupus is a disease that can plague both genders and people of all ages, most people who have the disease are women of childbearing age .
The singer Seal is a very visible face of discoid (cutaneous) lupus which is a disease of the skin.
The extensive scarring on Seal’s face shown in the picture above is from the discoid/cutaneous version of the disease.
“Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles . . . Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.” Lupus Foundation of America
Rapper Trick Daddy has also recently come forward to talk about his lupus diagnosis. He has systemic lupus (the version Lady Gaga was tested for) which is a potentially more serious version of the disease because it can affect the body’s major organ systems. The disease is chronic (meaning it is a long-term illness) and an autoimmune disorder that can damage any part of the body (skin, joints, and/or organs inside the body).
The Miami rapper discussed his Lupus diagnosis on a radio show (discussed here on Hip Hop Crunch)
“I went to the doctor, like, 12 years ago. She took all kinds of tests, because I was trying to get rid of what we call dry skin; she did biopsies and blood tests and swab tests. She told me I have lupus.”
Last week, one of my friends called to say she had an extra ticket to a lupus event featuring Julian Lennon. Did I want to go? Yes!!! Could I? Sadly no. I missed Julian Lennon performing Lucy, a lupus-tribute and I was kind of crushed. But I decided that it was a great hook for a Song-in-Action blog entry.
Check out James Scott Cook and Julian Lennon on the Lupus Foundation of America website as they explain how the song Lucy came to be and their goal to raise funds and awareness for Lupus research. Watch James and Julian perform Lucy (after interview on the origins of Lucy, app. 3:30).
On a more personal note, I want to thank everyone who supported Team Metamorphosis‘ fundraising efforts during the 2010 DC Walk for Lupus Now.
With the help of my mom and sorors Keisha and Monica, Team Metamorphosis raised almost $1400 (with more coming in before May 30th). I am very excited and humbled by the support of friends, family, and the virtual community formed on Twitter and Facebook. We couldn’t have done it without you.
The other day my mother asked me: “when was the last time you wrote a blog?” On the one hand I was excited because my mother actually reads my blog. But on the other hand, I was embarrassed to tell her how long it had been. I have a great excuse, several actually, but still need to carve out the time to write about music and activism – a subject very close to my heart.
So what has been taking up all of my time? I am very proud to be a committee member of the DC 2010 Walk for Lupus Now, hosted by the Lupus Foundation of America, Greater Washington Chapter. It’s going to be on April 17, 2010 in Washington D.C. – Pennsylvania Avenue, N.W. between 13th and 12th St. N.W. – Next to Freedom Plaza. Registration starts at 8:30 a.m and the walk starts at 9:30 a.m.
This year I have dual roles – as co-chair of the 2010 Greeks Walk for Lupus Challenge and as leader of Team Metamorphosis. How did I get involved? The short story is that I have had lupus since I was a teen (see profile in the Bowie Blade) and jumped on the opportunity to help the Lupus Foundation, Greater Washington raise money for lupus awareness and for lupus research. The longer, more interesting story involves the lovely ladies of Sigma Gamma Rho Sorority, Inc. Having lupus at any age sucks. But having it as a teenager and then in college is really challenging. Over the years, many of my sorors (esp. Monica Payne, Christy Rather, Keasha Cooper, LaShaun Franklin, Alycia Marshall, Tijuana Patty Klaus, Sheryl Jones, Crystal Kelley-Robinson, and Sonia Harris) went above and beyond the call of sisterhood to support me when I was sick or encourage me when I was down (EEE-Yip ladies).
So when about a year ago, the ladies of the Eta Beta chapter of Sigma Gamma Rho (University of Maryland at College Park) had a lupus fundraiser, I was there to support the cause. That night, I said to myself: “I will volunteer with the Lupus Foundation, I will volunteer, I will volunteer!” Not too long after, the Greater Washington lupus chapter invited me to an event and much to my surprise, there was soror Kassandra Kearse, my very own little sister, running the dinner. Why? Because she is the development manager for the Lupus Foundation, Greater Washington!
Now anybody who is part of a sorority knows that there is no way to overlook this kind of full-circle coincidence. I hadn’t seen Kassandra in at least ten years. Kassandra hopped on signing me up to volunteer right away, like no time had passed at all. It’s as if she heard the promise I made to volunteer and was just waiting for me to show up to fulfill it. Kassandra suggested that I help with the 1st annual Greeks Walk for Lupus challenge, a mini-event within the DC Walk for Lupus Now in which local sororities and fraternities compete for the title of Greek Organization of the Year based on their fundraising efforts.
Kassandra also encouraged me to start my first walk team: Metamorphosis.
My goal for Team Metamorphosis was to raise $300, but we have far exceeded that amount. As of April 11th, Team Metamorphosis has raised over $1000. Thanks to my team members (Mom and Sorors Monica and Keisha) we are on a roll. Help us go the distance by continuing to donate to the cause. Donations can be made online on our team page or through the mail. There is no donation too large or too small.
Thanks everyone for all your support. See you at the walk.
P.S. After the walk is over, the blogs about music and activism will come back! To learn more about Lupus, click here.