Lupus Now Magazine Seeks Interviewees for Spring 2010 Issue

Good morning everyone.

We are excited about a new year of Lupus Now! But we can’t make the magazine a success without a little help from our readers and friends.

One feature article will be on cognitive functioning complications of lupus. This will not be a medical article; instead, personal experience will be the focus. If cognitive dysfunction has affected your ability to do your job, attend school, manage your household, or care for your family, we would like to hear from you.

Our first Wellness piece will look at how to promote better sleep. If your lupus has caused sleep disruption for you, we would like to know how you have faced the challenge.

Our second Wellness piece will look at personal esteem issues. We will need your tips and suggestions on coping with hair loss, skin rashes, frustrating prednisone weight gain, and other familiar features of lupus. Men, we want to hear from you, too!

If you would like to participate on an article interview, please email your name, phone number, location, and email address to lupusnow@lupus.org. Use "Spring Magazine" in the subject line. It will also be helpful if you include a little bit about your lupus and why you are responding to one of these interview requests.

On behalf of the editor of Lupus Now magazine, thanks!

Wick

Become Your Own Insurance Policy: 6 Ways To Ensure A Better Life With Lupus

Jennifer MacLean felt a rush of emotions when she learned she had lupus in April 2008, after at least 10 years of seeking a diagnosis.

“I was horrified,” recalls MacLean, 42, an operating nurse from Sparta, NJ. “I was shaking in my car. So many people had dropped the ball; I felt very angry.”

Once the anger and surprise passed, however, MacLean realized she had to take steps to continue leading her life. “I had to rally, and I had to work,” she says. Her first thought was on preserving her financial stability.

“I remember thinking I needed to get disability insurance because if I couldn’t work, I would be lost financially,” MacLean says. She applied for various policies, only to be denied at every turn.

“I was told they didn’t want my money. I had lupus, and no one wanted to insure me.” But instead of giving up, MacLean decided to be proactive about her situation.

“I knew I had to do whatever was necessary to stay as healthy as possible,” she says. “I needed to be my own insurance policy.”

Take these 6 steps to begin ensuring a better life while facing the challenges of lupus.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 7

This week ... thankfully there were two episodes of Hell's Kitchen. In hour one, Suzanne needs to try to find a way to work with the Blue Team, to which she was switched at the end of the last episode. The first challenge is to create three entrees out of fifteen ingredients that would be considered local to the Whistler, British Columbia area. The judges for this challenge are Olympic medalists, Sasha Cohen and Jonny Moseley who declare the Blue Team victorious.

In hour two, the six remaining contestants are presented with their black jackets and they must now work together as one team. They arrive in the kitchen for their first individual challenge, which is “Taste It, Now Make It.” They are paired up into three teams of two, and presented with one of Chef Ramsay’s signature dishes. The twosomes must recreate the dish using just the look and taste of it to guide them. In the end Dave and Suzanne are the only ones to identify the citrus juice in the sauce and they win a lunch at Gordon’s LA restaurant, Gordon Ramsay at The London West Hollywood. The losing pairs get to stay behind at the restaurant and change the dining room over to a “couple’s night” theme.

At dinner, things go from bad to worse -- between raw fish, sweat in the food, and burnt lettuce, Chef Ramsay practically has a breakdown and walks out of the building. The stunned Black Team is left to do their jobs as well as Gordon’s. When Chef Ramsay comes back, he throws Van, Ariel, and Suzanne out of the kitchen, leaving the service to be completed by Kevin, Dave, and Tennille. These three are then instructed to choose two out of the three ejected players for elimination. Sabrina got the boot in the first show and Van got kicked off in the second show.

Off topic from Hell's Kitchen -- as many of you may know, there has been no new lupus drug in more than 50 years! A new drug could be a world of greatness for all of us who suffer from this disease on a daily basis.

This is why the LFA has launched the campaign, "Band Together For Lupus," for anyone who has, or knows someone who has, lupus. We want all of you to wear the LFA purple wristband until the FDA approves a new drug for lupus!

You can find out more about this campaign, and buy your wristband, at www.lupus.org/bandtogether.

Let’s all get together and do what we can to fight this disease that has no cure "yet" ...

Until next week,
Amanda

LFA Wants Everyone to "Band Together for Lupus"

The Lupus Foundation of America wants you to join the band!

The LFA has launched a new campaign, Band Together for Lupus℠, to highlight the need for safer, more tolerable, and effective medications. We are asking people to wear an LFA purple wristband until there is a medication approved specifically for lupus by the U.S. Food and Drug Administration. It’s been 50 years since the FDA approved a medication to treat lupus -- when Dwight D. Eisenhower was President! Current medications for lupus have unacceptable side effects that include bone loss and osteoporosis, infections, infertility, joint replacements, cancer, and more. Together, we can offer support to people with lupus, their loved ones, and the professional medical community who fight every day to find new treatments.

To learn more about LFA’s new campaign, and find out how you can join the “band,” visit www.lupus.org/bandtogether.

Don’t forget to share the wristbands with friends and family too!

Improving How Signs of Lupus Nephritis Are Measured

The kidneys act as filters to remove waste materials from the blood; these waste materials are then passed out of the body in the urine. Lupus that affects the kidneys, termed lupus nephritis, or LN, can cause inflammation that damages the kidney tissue. If LN is not diagnosed early and treated aggressively, this tissue damage can affect the kidneys’ ability to filter waste. If the kidneys become too damaged to function properly, a person may need to undergo regular (two-three times per week) dialysis treatments, in which the blood is circulated through a machine that removes the waste material. Lupus nephritis can eventually lead to end stage renal disease (ESRD) and the need for a kidney transplant.

Read more >>

The Thyroid-Lupus Relationship

The thyroid gland makes hormones that act on many functions in the body, from how quickly cells use energy to bone development and nerve cell growth. The thyroid’s production of hormones is regulated by TSH (thyroid-stimulating hormone), which is made in the pituitary gland.

Autoimmune thyroid disease occurs when the body makes antibodies to thyroid cells. Different antibodies to the thyroid can have different effects. Some can inhibit the thyroid cells, causing an underactive thyroid (thyroiditis); others can stimulate the thyroid cells, leading to an overactive thyroid (Graves’ disease). Many of the symptoms of autoimmune thyroid disease -- fatigue, muscle pain and weakness, specific antibodies -- are also symptoms of lupus. Several studies have suggested that thyroid disease occurs more often in people with lupus than the general population.

Read more >>

Make the Most of Your Doctor Appointments

Whether it’s the first time or the 50th, doctors’ office visits can be stressful. For ideas on ways to make the most of your visits, we spoke to a teen with lupus, a pediatric rheumatologist, a young woman who was diagnosed with lupus in 1994, and a public health scientist and author. Here are their suggestions.

Get a Good Start

Approach the appointment with the right expectations. “People should expect to see a doctor who is caring and prepared to see them,” says Steven R. Feldman, M.D., Ph.D., professor of dermatology, pathology, and public health sciences at the Wake Forest University School of Medicine and author of Great Medical Care: The Handbook for Making Your Visit to the Doctor Better. He adds, “Start things off right by having a positive attitude.”

Read the rest of the suggestions here.

* Taken from the Fall 2009 issue of Lupus Now magazine

Fight Lupus. Be a Fundraiser. Create Your Own "Page of Hope."

We've made it easy for you to create and promote your own personal fundraising pages. Honor someone special in the fight against lupus. Celebrate a special event. It's easy help raise funds to find the causes and the cure for lupus by creating a Page of Hope.

You can easily customize and build a Page of Hope, then invite family and friends to give in honor or in memory of someone in lieu of giving or getting gifts. It’s a powerful way to make a difference and give a message of Hope.

It’s easy to create a Page of Hope. Get started now.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 6

Hello all. I am back with my weekly rundown of the happenings on Hell's Kitchen. This week was a tough one to follow for a couple of reasons -- not the least of which being that yours truly was not on the show. I thought this week was pretty entertaining for the most part. My girls won another challenge and the boys were on the ropes this entire episode.

I will have to start by saying that watching this week was odd for me. Seeing that Suzanne was still there when everyone wanted her out and then watching her try to be uber-nice was rough. Luckily the girls did not buy it. When I say the challenge was crepes I couldn't believe that
I had the misfortune of being eliminated last week. Gordon mentioned that his time in France was a very important in his development as a chef and I can totally relate. I worked there and it is the best decision I ever made in relation to my culinary career. Crepes are not easy to make, and is not something you can teach in a couple of minutes. I would have been a big asset in the challenge. In the end the girls won the challenge and the guys were left to prep both kitchens for service.

I would not have wanted to be the guys after this loss. Prepping the kitchen is one thing, but doing it for both sides and having new ingredients that most of them have never dealt with is rough. The girls are off practicing their mime skills and dining on fois gras while the guys are trying to prep frogs legs. I think you can see the exhaustion and frustration start to set in on the guys’ faces and that leads to lack of concentration. As service went on you could start to see the wheels coming off on both teams. Suzanne and Sabrina were in way over their heads at this service. Ariel was the one that kept that service from going completely off track. She showed a lot in that service. In the end both Sabrina and Suzanne were booted out of the kitchen for the girls and Andy was booted for the guys. When it was all over neither team won the night and they were sent off to pick two to put up for elimination Ultimately poor Andy got the boot.

As for me during this time I was enjoying just relaxing and trying to recharge my body. I wish I was still competing, but my body was not hating the fact that it could sleep and exercise on my own schedule. I hope you all stay tuned because there are many surprises to come. You all keep watching and I will keep fighting. Below is another one of my favorite recipes for all of you to try out. So tell me ... what did you think of the episode?

Amanda


Amanda's Recipe: Grilled apricot glazed chicken with grilled pineapple and jalapeno salsa

2 chicken breasts seasoned with salt, pepper and olive oil. Make sure the grill is hot enough and grill the chicken on each side for approximately 10 minutes or until cooked through.
Take off grill, and brush with apricot preserves. (heat that preserves in a sauce pan for easier glazing.)

Peel the pineapple and cut into thick slices. Oil the grill so the pineapple doesn't stick. Grill on each side until you have good grill marks and carmelization.

For the salsa:

• 1 jalapeno. remove the seeds and dice.
• 1 grilled pineapple diced
• 1 red onion diced.
• 1 tomato chopped
• 1 bunch cilantro diced
• Juice of 1 large lime

Combine all ingredients and salt and pepper to taste. Place grilled chicken on plate and top with salsa.

Serves 2 - 3.

Lupus Foundation of America's "Participating in a Clinical Trial" Chat Transcript Posted Online

Thanks to everyone who attended the "Participating in a Clinical Trial" webchat hosted by Mr. Kenneth Getz. It went really well; lots of great questions were asked. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the October 14, 2009 webchat. The topic is "Work Disability / SSDI / Health Insurance." Mark your calendars for that.

You can learn more about LFA's upcoming webchats here.

Have You Filled Your Freezer to Find a Cure?

The Lupus Foundation of America (LFA) and Schwan’s Home Service recently joined forces to fund lupus research.

Schwan’s Home Service brings more than 350 delicious frozen foods right to your door, all with a 100% quality guarantee. From now until Saturday, September 19, when you place a food order at schwans.com or call 1-888-SCHWANS, use promotion code "LF" at check out. Schwan’s Home Service will donate 10% of the funds from your order back to the LFA.

Don't wait ... this offer expires Saturday, 9/19/2009!

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 5

Hello once again! As always, it is a pleasure to be blogging away with you guys. I hope you all had a chance to watch this week’s episode. How many of you didn't see that coming? I know I didn’t. I thought all was good for me after the service. I guess it goes to show that you can never be too sure as to what will happen in life. Let's get right into the show.

I loved the challenge we had with the guys this time. Every chef knows that the best tool, or instrument you can have is a good palette. I think mine is pretty good, but once you realize that the food you are tasting is not in its typical form, or at its normal temperature then all bets
are off. I was really proud of our team and how we performed. I felt good that when we got to me and we had a lead that I would be able to take it home. It was close, but the girls prevailed once again. The reward was awesome. I have never had dinner in total darkness. That
was a trip! All you can do is try to feel your way -- a fact that Gordon became privy to first hand. Sorry Gordon!

I thought service was pretty much a dead heat between the two teams. Both sides struggled but I felt we were ahead in the game for most of the evening. Suzanne had a very rough time. She was already at odds with the team and then she just melted down in service. It happens but we all tried to make the best of it. I had a good service all in all. The exception was when Suzanne tried to lay the blame for her fish on me. In the end Gordon decided that the blue team was just slightly better. We all agreed we wanted to put up Suzanne and Sabrina based on their performance for that service. As Gordon tends to do though he decided to add to the mix, and unfortunately it was me. I didn't think there was any way I would be leaving. That would not be the case.

Even though I was surprised I was not upset. You just have to prepare yourself that it can be your night to leave no matter what happens. I know that in my mind it had a lot to do with my health and that the competition was only going to get more difficult for me physically. I hated to leave, but I was looking forward to getting the rest my body so desperately needed. I learned so much from the experience and am grateful I got the opportunity. I realize that when I am healthy I can hang with anyone in a kitchen. I would do it again in a second. I felt I could have made it to the end because I was starting to get a bit of my energy back. I really wanted to prove to myself that I could win, and when I had the lupus flare I wanted to prove to the people watching that this disease has to be taken seriously. I think I was able to do that, and I hope that came across.

I am thankful to all of you that watched and for the kind words and inspiration throughout. I will continue to chat with you until the end of the show, and hope you’ll continue to watch because you never know what surprises might take place.

Also, I would love to know what you thought. Feel free to leave some comments for this entry.

Please keep watching, and as always I will keep fighting.

Amanda

p.s. LFA Blog Editor here -- Check out this news clip of Amanda Davenport on Fox News.

LFA's "Participating in a Clinical Trial" Webchat to be Held Wednesday, September 9 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's Webchat is next Wednesday afternoon, September 9, at 3 p.m. Eastern Time.

The LFA welcomes Mr. Kenneth Getz, who will serve as the guest expert for the Participating in a Clinical Trial webchat.

This is your opportunity to ask questions and learn from an expert. Mr. Getz is the chairman of CISCRP -- a nonprofit organization that he founded to educate and raise public awareness of the clinical research enterprise -- and a Senior Research Fellow at the Tufts Center for the Study of Drug Development where he studies R&D management and operating models, investigative site, outsourcing, and study volunteer trends and policies. Ken is also the founder and former CEO of CenterWatch, a leading publisher in the clinical trials industry and one of two businesses that he has created and sold.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, September 9. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read the LFA's previous chat transcripts.