Got Your Sunscreen?
I read this week and interesting article from Health News Digest that made a plea to physicians to increase efforts to convince lupus patients to protect themselves from the sun. The plea came from Gerlinde Obermoser, MD, and Bernhard Zelger, MD, of Innsbruck Medical University in Austria.
"Patients with lupus have a triple need for photoprotection," they say. Lupus patients are more photosensitive than others, and medical treatments like immunosuppresants, can further increase the risk of non-melanoma skin cancer.
The doctor's have a point, and the need to recognize the greater dangers of photosensitivity is something we champion at About Lupus.
Have You Subscribed to the Newsletter?
This site thrives on the communication between you and me and all of our About Lupus readers, commenters and forum members. I want to thank all of you who have written me in the past, and who will (hopefully) write to me in the future.
Beyond the forum and the comments section, there’s another great resource for getting all of the lupus news you need to know: The About Lupus Newsletter.
Published once a week and delivered direct to your e-mail inbox, the About Lupus Newsletter gives you a chance to get a recap on some of the issues we've discussed, perhaps get a preview of information coming soon, and helps fill in the information gap otherwise.
If you haven't yet, sign up. It's free, it's informative, and, I promise, it will be fun.
Lupus severity Linked to Genes
Genetics and lupus is a burgeoning field of study for various reasons, and now a new study from researchers at the University of California has found some interesting genetic links between European ancestry and severity of SLE.
The study found that those with southern European ancestry were more likely to have severe SLE affecting kidneys and other major organs. Those with northern European roots were more likely to have milder lupus, affecting mainly the skin.
In fact, the researchers discovered a "clear correlation" between the amount of autoantibody (the anitbodies that attack a person's own system) production and southern or northern backgrounds. Southern European ancestry was linked to more autoantibody production, thus leading to more severe lupus.
Forum the Perfect Place to Network, Form Friendships
If you haven't had an opportunity to visit the About Lupus Forums yet, I encourage you to do so. It is slowly, but surely, become a great place to meet other people with lupus, connect and create new friends, and form an online support group - essential for living day to day with this disease.
If you're interested in other ways people around the world are Living with Lupus, here's a place to start:
A-List Movie Producer Reveals She Has Lupus
When I first started blogging about lupus, one of the first posts I created was a list of celebrities battling the disease. And this week I find that I have to add another name to the list: Hollywood icon Laura Schuler Donner.
Though not entirely secret, Donner has reached out to the public to reveal her battle with the disease – and to show people that you can live a normal life while fighting the illness.
And what a life! Donner, who is best known for her work on Pretty In Pink, Mr. Mom and all of the X-Men movies, is working on seven films at the moment, including a screen version of Secret Life of Bees.
"I wanted to tell people you can live a full life, even if you're not feeling well," Donner told the L.A. Times. "You can learn how to achieve on the same level as someone who is not handicapped by their health."
The most famous lupus sufferer is probably Michael Jackson, the King of Pop, and constant tabloid subject. He was diagnosed with the disease in 1984, shortly after his hit album, Thriller was tearing up the charts.
Another singer, Seal, real name Seal Henry Olusegun Olumide Adeola Samuel, battled discoid lupus when he was a child. His trademark facial scarring is a result of the disease.
Other famous lupus patients:
- Ray “My Favorite Martian” Walston
- Baseball player Tim Raines
- Ferdinand Marcos
- Charles Kuralt
- Leslie “American Idol” Hunt
Boston Globe: Truly Effective Lupus Drug in Five to Ten Years
The Boston Globe reports in its June 9th edition that a truly effective drug to combat lupus won’t appear in the U.S. market for 5 to 10 years. The report is part of health reporter Judy Foreman’s column.
We should take that as good news – the 5 to 10 years – in part because of “an explosion in knowledge about how cells ‘talk’ to each other chemically in the immune system.”
Current treatments, like Immuran (azathioprine), come with harsh side effects, and recent hopes for new drug treatments, such as Rituxan (rituximab), have mostly been dashed.
Foreman quotes Dr. Lee Simon, a rheumatologist at Beth Israel Deaconess Medical Center, as this being “an incredibly exciting time” for lupus research, despite the lack of a wonder drug because of the focus on research and the number of new drug therapies that show promise.
Dozens of Healthcare Professionals Gather for Lupus Flare Conference
Today marks the end of the Lupus Foundation of America’s second International Flare Conference, during which more than 80 research scientists and physicians come together to discuss gaps holding back approval of new lupus treatments , modifications to tools used to monitor the autoimmune disease and to define, as a group, what constitutes a lupus flare. The event took place June 5 and 6 in Washington, D.C.
The reason behind defining lupus flare is because of the many ways lupus manifests itself. But defining a flare is important if the scientific community hopes to more accurately measure disease progression and treatment effectiveness.
The goal of the summit is to drive toward new treatments that are specific to lupus, rather than borrow ideas and treatment plans from other, similar, diseases. According to the Lupus Foundation of America, no new drug therapies have been approved for lupus in more than four decades.
More on lupus flares:
Tackling Lupus Flare Prevention Tips
No one can say for certain that there’s any way to prevent a lupus flare, but the Lupus Foundation of America does provide a number of “healthy habits” that can help patients reduce the potential for triggering a flare.
We’ve taken those habits and gone one step further, by providing some suggestions on how to get into those habits and stay in those habits – thus possibly increasing your chances of staving off a flare.
Lupus Flare Prevention Tips is one of a number of new features on the site. Others include:
If you like these, tell us what else you'd like to see online!
Have You Subscribed to the Newsletter?
This site thrives on the communication between you and me and all of our About Lupus readers, commenters and forum members. I want to thank all of you who have written me in the past, and who will (hopefully) write to me in the future.
Beyond the forum and the comments section, there’s another great resource for getting all of the lupus news you need to know: The About Lupus Newsletter.
Published once a week and delivered direct to your e-mail inbox, the About Lupus Newsletter gives you a chance to get a recap on some of the issues we've discussed, perhaps get a preview of information coming soon, and helps fill in the information gap otherwise.
If you haven't yet, sign up. It's free, it's informative, and, I promise, it will be fun.
Forum the Perfect Place to Network, Form Friendships
If you haven't had an opportunity to visit the About Lupus Forums yet, I encourage you to do so. It is slowly, but surely, become a great place to meet other people with lupus, connect and create new friends, and form an online support group - essential for living day to day with this disease.
If you're interested in other ways people around the world are Living with Lupus, here's a place to start: