March 9, 2012

Guest Blog: Catching Up with Halee After Everyday Health!

15 year old Halee Newby and her family, long-time supporters of the Lupus Foundation of America (LFA) and its Wisconsin Chapter, were featured in an episode of Everyday Health on February 25, 2012. In her guest blog, she reflects on life since the show aired, updates about her health, and more. Thanks again Halee for helping raise awareness of lupus! Did you miss it? Visit Everyday Health Web site for video clips from this episode!

All I can even say is: wow!! My family and I had such an incredible time working with the crew of Everyday Health! It was so much fun working with Ethan and Jenna- they were truly inspirational, supportive and SO much fun to be around! However, I wanted to give you a quick update on some of the things that have happened to us since the airing of the program.

We have received emails and Facebook messages from all over the country from people we don't know who are thanking me for "putting myself out there" to help explain more about lupus, and how someone can look so normal on the outside but be so sick on the inside. We received a truly great email from a woman that said she has been suffering for the past year from what they now believe is lupus (she is still awaiting the final diagnosis). But what we thought was so cool about her email is she said, "thank you so much! My husband sat down and watched the program with me and he had an "ah ha" moment. Halee explained what she goes through so well, and my mom saying what she did, really shed a light on how someone with Lupus can and does feel. My husband finally gets it!" The awareness of lupus increased dramatically from the show- we were hoping it would touch at least one person, but it seems that it touched many more!

(L-R): Taylor Kassel, Ethan Zohn, Halee Newby, and Jenna Morasca
We also met a kid that was on Everyday Health the week prior to our episode; Amanda's Healing Hearts. While I haven't spoke with her yet, I look forward to being able to! We also stay in touch with Taylor and Bonnie. I'm beyond happy to report that Taylor is DONE with her chemo! She is currently on all of the same medication that I am on right now, but nonetheless, the chemo is over with!

While I missed a bunch of school lately with another flare, I feel so blessed with the outcome of the show. I’ve had teachers, friends, parents, and a few random kids come up to me and tell me how proud they are of me and how they look up to me- it’s incredible! I’ve also had many people tell me that I need to have a job/career as a public speaker or mass communication. That’s really an intriguing thought and it had never occurred to me! Probably because all I had to do was talk about something that I had lived with for almost 5 years now… it came so naturally!

I was so proud of my parents too- my mom only cried a few times, my dad actually did cry once, and my little brother had a speaking part! It was really cool to see that everyone enjoyed themselves and had a great time at our event. Our local Lupus Foundation of America Chapter has asked me to help during their walk this year by doing a carnival tent with face painting and butterfly tattoos. I think it will be fun to hang out with the little kids and allow them to have a chance to learn more about fundraising and what they can do to help the cause!

One of the biggest things for us has been the monstrous support from our whole community; people are already asking when our next fundraiser will be! I think we are planning on another volleyball fundraiser/ carnival event for the little kids. We are also going to an open-mike night this year in the hope that local comedians, singers, performers, etc. will come and perform. All of the money raised will once again be donated specifically to finding a cure for lupus. Through this whole process we have learned how much people want to help, how much they love us, and how much we really mean to them.

Taylor, Halee, Ethan, and Jenna with other members of the fundraiser
As always, we must thank the Lupus Foundation of America for getting us on the program, but more importantly for being there for everyone that may suffer from lupus. From the work they do in enlisting politicians involved in getting research funds, to the educational materials they send out daily to people newly diagnosed, the Lupus Foundation of America is truly amazing. And lastly, for the support they give to all of the state associations for their help in raising funds and awareness on a more grass roots basis.

March 7, 2012

15 Questions with Dr. Brad Rovin - Kidney Issues with Lupus


Lupus nephritis, or inflammation in kidneys caused by lupus, can make kidneys unable to properly remove waste from your blood or control the amount of fluids in your body. This month, Dr. Brad H. Rovin answered your questions about kidney issues and lupus.

Read his answers now!

March 5, 2012

Actor, Comedian, and Musician Nick Cannon Diagnosed with Lupus Nephritis

During an appearance on ABC-TV’s Good Morning America, actor, comedian, and musician Nick Cannon announced that he has lupus-related kidney disease, called lupus nephritis.

Lupus is a disease that can affect any organ system and kidney involvement is one of the most serious manifestations of the disease. By publicly discussing a very personal health issue, Nick Cannon is helping to increase awareness of lupus and its health effects on the kidneys.

Read more >>

February 21, 2012

Lupus Research Report: Dynamics of Lupus within First Five Years of Diagnosis

The severity of lupus is influenced by both disease activity and the possibility of organ damage over time. Organ damage in people with lupus is thought to arise slowly over time due to an interaction of disease processes, possible co-existing conditions, and drug treatments. Levels of autoantibodies circulating in the blood are a primary indicator of lupus disease activity and can change over time, but these dynamics around the time of lupus diagnosis have not been well studied. The results of this study reveal differences in autoantibody profiles over time in people with lupus, with important ethnicity-related differences, and their relationship to lupus-mediated organ damage over time. The potential relationship between organ damage and steroid use in people with lupus is discussed.

Read more>>

February 14, 2012

Love Actually - Appreciating Your Mate

When one partner in a relationship has a chronic disease, both can be affected. However, open and honest communication can be the most powerful tool. Read Love Actually – Appreciating Your Mate now and tell us: What is your advice to someone who loves someone with lupus?

February 9, 2012

The Editor of Lupus Now® magazine needs your help with the Summer 2012 issue!

Unusual jobs: For our cover story we are looking for men with lupus who will talk about how they balance their out-of-the-ordinary job with the challenges of lupus. If that description fits you, write to us at lupusnow@lupus.org, with "unusual" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

Play: Do you still get silly and play the way you did as a child? We’re going to write about the importance of playfulness, and how acting like a kid again can benefit your health. If you know how to unwind and how not to act your age, write to us at lupusnow@lupus.org, with "play" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

Spirituality: Has a sense of spirituality helped you on your lupus journey? If you have some suggestions for other readers, write to us at lupusnow@lupus.org, with "spirit" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

Skin: Symptoms of cutaneous lupus can range from rashes to lesions, causing scarring, changes in pigment, and more. If you have experienced skin involvement due to lupus and you can talk about treatments that have helped—whether from medication or a procedure—write to us at lupusnow@lupus.org, with "skin" in the subject line. Please include a little bit about your life with lupus, along with your name, location, and telephone number.

My View: Maybe nothing comes more naturally than daydreaming about summertime during the chill of winter. Send a description of your ideal summer vacation, in 30 words or less, to lupusnow@lupus.org, with "vacation" in the subject line. We’ll print as many as we can in the Summer issue, and post the rest online at lupusnow.org.

February 7, 2012

Congressional Lupus Caucus Launched in U.S. House of Representatives to Advance Awareness of Lupus

Today, Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA) announced the formation of a Congressional Lupus Caucus. The Caucus will work in collaboration with the Lupus Foundation of America, the leading voluntary health organization for people with lupus, to ensure that all Members of Congress are armed with the understanding of the impact of lupus on individuals and their families, and actively support the advancement of lupus research and increased awareness of lupus among the public and health professionals.

Ask your Representative to join the Caucus today! Click here to take action!

Learn more about the Caucus on LFA's Web site.