Lupus

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    Lupus News From Medical News Today

  • Smokers With Common Autoimmune Disorder At Higher Risk For Skin Damage

    4 Nov 2009 | 12:00 am
    As if there weren't enough reasons to stop smoking, a team of researchers at the Research Institute of the McGill University Health Centre (RI-MUHC) have just found another. A study led by Dr. Christian A Pineau, Co-Director of the Lupus and Vasculitis clinic at the MUHC, has clearly linked skin damage and rashes to smoking in people with systemic lupus erythematosus (SLE). The study was published in a recent issue of the Journal of Rheumatology.

  • Promise Of A New Lupus Treatment Is A Groundbreaking Achievement

    3 Nov 2009 | 7:00 am
    Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S.

  • Lupus Research Institute: Benlysta(TM) Trial Results In An Historic Research Breakthrough And Victory For People With Lupus

    3 Nov 2009 | 2:00 am
    The Lupus Research Institute (LRI) and its National Coalition of state and local lupus organizations congratulate Human Genome Sciences (HGS) and GlaxoSmithKline for achieving an historical landmark - the second positive phase 3 clinical trial of Benlysta (belimumab), the first successfully tested new drug developed specifically for people with systemic lupus. "This is a pivotal moment in lupus research," said Margaret G.

  • BENLYSTA™ Successful In Second Pivotal Clinical Trial

    3 Nov 2009 | 12:00 am
    Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S.

  • Lupus Patients Who Receive Kidney Transplants Rarely Develop Lupus Nephritis

    2 Nov 2009 | 3:00 am
    Individuals with a history of lupus who receive a kidney transplant rarely develop the serious inflammatory condition lupus nephritis in their new organ, according to a paper being presented at the American Society of Nephrology's 42nd Annual Meeting and Scientific Exposition in San Diego, CA. The findings indicate that having lupus should not keep individuals from seeking a kidney transplant if they need one.
 
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    Latest News from the Lupus Research Institute

  • Human Genome Sciences and GlaxoSmithKline Announce Positive Results in Second of Two Phase 3 Trials of Benlysta™ in Lupus

    2 Nov 2009 | 9:49 am
    BENLYSTA (belimumab) 10 mg/kg plus standard of care met its primary efficacy endpoint by achieving a statistically significant improvement in patient response rate versus placebo plus standard of care at Week 52 in BLISS-76 Primary efficacy endpoint met in two pivotal Phase 3 trials, as specified by Special Protocol Assessment agreement with FDA read more

  • Benlysta™ trial results in an historic research breakthrough and victory for people with lupus

    2 Nov 2009 | 3:47 am
    Second successful phase III trial points to the first new lupus treatment in over 50 yearsNew York, NY (November 2, 2009) -- The Lupus Research Institute (LRI) and its National Coalition of state and local lupus organizations congratulate Human Genome Sciences (HGS) and GlaxoSmithKline for achieving an historical landmark - the second positive phase 3 clinical trial of Benlysta (belimumab), the first successfully tested new drug developed specifically for people with systemic lupus. read more

  • Lupus Research Institute Earns A+ from American Institute of Philanthropy

    30 Oct 2009 | 11:27 am
    Only lupus organization designated a “Top Rated Charity” by national charity watchdogOf the over 500 charities rated by the American Institute of Philanthropy (AIP) this year, the Lupus Research Institute (LRI) is the nation’s only lupus organization to meet the stringent standards for financial efficiency and accountability and win a spot on the “Top Rated Charity” list.  The fiercely independent and nonprofit AIP helps donors make informed giving decisions. read more

  • ACR: Depression and CVD Linked in Patients with Lupus

    26 Oct 2009 | 11:47 am
    PHILADELPHIA – For patients with systemic lupus erythematosus, depression further increases their already elevated risk for cardiovascular disease, researchers said here. In these patients, depression was associated with a nearly four-fold greater risk of subclinical atherosclerosis (OR 3.85, 95% CI 1.37 to 10.87), Carol Greco, PhD, of the University of Pittsburgh, reported at the meeting of the American College of Rheumatology. Read full article

  • Genetic Link to Lupus

    20 Oct 2009 | 1:05 pm
    More Than a Dozen Different Genes May Play a Role in Causing LupusOct. 19, 2009 – At least a dozen or more genes may help explain what causes lupus, according to two new studies. Researchers have identified 12 genetic variants that are associated with an increased risk of systemic lupus erythematosus (SLE), the disease commonly referred to as lupus. Read full article
 
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    ButYouDontLookSick.com

  • Facebook, Twitter, and MySpace Oh My! ButYouDontLookSick.com on the web!

    2 Nov 2009 | 10:10 am
    We love being connected with our readers! Since we have added those "handy dandy" features at the bottom of every article, we have noticed our readers have shared our articles, posted them on their personal profiles and more. We can not thank you enough for sharing this site with your friends and family. Even though we hope you come to ButYouDontLookSick.com every day for our new articles and tips.. we know there are other places on the web where you guys like to hang out. Social Networking is more and more popular and we like to stay connected! We can use technology as a tool to help each…

  • National Heath Awareness Months List

    1 Nov 2009 | 10:38 am
    Every month usually has an "awareness" campaign associated with it. A time of year, when during that month or week that organization combines their efforts to get information out to the public. For example October is Lupus Awareness Month and also Breast Cancer Awareness. You might notice more public service advertisments, or local fundraising walks in your area during these months. I thought it was interesting and important to have 1 list with all the national health awareness months. I have listed what I could find below. It is so important for all patients to support each other. Click to…

  • Long Island Business News Honors Christine Miserandino Donato as a "Heathcare Hero"

    29 Oct 2009 | 8:22 am
    Long Island Business News Honors Christine Miserandino Donato as a "Heathcare Hero" Long Island Business News and Hofstra University have recognized Christine Miserandino Donato for her work on ButYouDontLookSick.com and with the Lupus Alliance of America - Long Island/ Queens affiliate. Click to read more ...

  • Everything I thought I knew about going to the hospital. ( also known as do what you gotta do)

    23 Oct 2009 | 9:19 pm
    Unfortunately when you have a child with a chronic illness, you come to think of yourself as some sort of expert on the subject. It's not exactly a specialty that you dreamt of having, but one nonetheless that you take ownership of with some sense of pride. Click to read more ...

  • Sometimes when it rains, you need to make rainbows! TEAM CHRISTINE raised $10,145 for the Lupus Walk

    23 Oct 2009 | 8:19 am
    I am so happy to announce that TEAM CHRISTINE raised $10,145 for the Lupus Walk!!!! Thank you everyone for your donations and support! As, of now we are the top fundraising team for this walk as we have been for many years. What a great legacy and tradition. We still have some checks comin in-- so hopefully we can reach for that $10,000 goal. If not, we are SO proud of how much we raised and our continued positive spirit as a team. We couldn't do it without all of your support and donations!! You can still donate here: http://www.firstgiving.com/cdonato Sometimes when it rains, you need to…
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    Everyone's Blog Posts - BUTTERFLIES AMONG US

  • MicroRNA’s Role in Interferon’s Contribution to Inflammation

    William Davis
    Interferons (IFNs) are proteins produced by immune cells when the immune system is activated. They send different instructions to cells depending on the needs of the immune response; this can lead to cells making certain inflammatory proteins. IFNs communicate with the cells by linking up with receptor proteins along the cell surface, the way a key fits into a lock. This action sends a signal into the cell that eventually either turns on or turns off the process we recognize as inflammation. There are a number of signals and switches along the communication pathways that control inflammation,…

  • LFA's "Social Wellness ... and Helping Others Understand Lupus" Webchat to be Held Wednesday, November 11 at 3 p.m. Eastern

    William Davis
    Reminder -- the Lupus Foundation of America's webchat is next Wednesday afternoon, November 11, at 3 p.m. Eastern Time. The LFA welcomes Ms. Cindy Coney, who will serve as the guest expert for the "Social Wellness, Making Connections and Helping Others Understand What You Go through with Lupus" webchat. This is your opportunity to ask questions and learn from an expert. Ms. Coney is a nationally recognized speaker and educator. She holds a Master’s Degree in Educational Leadership and is a Certified Prevention Professional. For over 25 years, Cindy led a non-profit agency which developed…

  • Promise of a New Lupus Treatment is a Groundbreaking Achievement

    William Davis
    BENLYSTA™ Successful in Second Pivotal Clinical Trial Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA). Both trials demonstrate that…

  • Nominate the Lupus Foundation of America for “Best Non-Profit Use of Social Media” in Mashable's 2009 Open Web Awards

    William Davis
    Mashable, in partnership with MOTOBLUR, is conducting the 3rd Annual Open Web Awards: Social Media Edition. The 2009 Open Web Awards is Mashable’s international online voting competition that covers major innovations in web technology and social media. The Lupus Foundation of America (LFA) is participating, and would like to take the category of “Best Non-Profit Use of Social Media.” We need you and your friends and family to help us win! How You Can Help Once a day, every day between now and November 15, you and your family, friends, and coworkers can nominate the Lupus Foundation of…

  • Factors That Influence Pregnancy Outcomes in Women with Lupus

    William Davis
    Although women with lupus used to be advised to avoid getting pregnant, out of fear of complications for the mother, the baby, or both, a better understanding of the complications of lupus and improved management of lupus pregnancies have resulted in improved outcomes. Today at least 85 percent of lupus pregnancies result in live births. However, doctors still advise women who have active lupus kidney disease (lupus nephritis, or LN) not to get pregnant until their disease has been inactive for at least six months. Read more.
 
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    On the Road to a Lupus Cure

  • MicroRNA’s Role in Interferon’s Contribution to Inflammation

    6 Nov 2009 | 5:03 am
    Interferons (IFNs) are proteins produced by immune cells when the immune system is activated. They send different instructions to cells depending on the needs of the immune response; this can lead to cells making certain inflammatory proteins. IFNs communicate with the cells by linking up with receptor proteins along the cell surface, the way a key fits into a lock. This action sends a signal into the cell that eventually either turns on or turns off the process we recognize as inflammation.There are a number of signals and switches along the communication pathways that control inflammation,…

  • LFA's "Social Wellness, Making Connections and Helping Others Understand Lupus" Webchat to be Held Wednesday, November 11 at 3 p.m. Eastern

    4 Nov 2009 | 5:46 am
    Reminder -- the Lupus Foundation of America's webchat is next Wednesday afternoon, November 11, at 3 p.m. Eastern Time.The LFA welcomes Ms. Cindy Coney, who will serve as the guest expert for the "Social Wellness, Making Connections and Helping Others Understand What You Go through with Lupus" webchat.This is your opportunity to ask questions and learn from an expert. Ms. Coney is a nationally recognized speaker and educator. She holds a Master’s Degree in Educational Leadership and is a Certified Prevention Professional. For over 25 years, Cindy led a non-profit agency which developed…

  • Promise of a New Lupus Treatment is a Groundbreaking Achievement

    1 Nov 2009 | 11:03 pm
    BENLYSTA™ Successful in Second Pivotal Clinical TrialHuman Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA).Both trials demonstrate that…

  • Nominate the Lupus Foundation of America for “Best Non-Profit Use of Social Media” in Mashable's 2009 Open Web Awards

    28 Oct 2009 | 9:20 am
    Mashable, in partnership with MOTOBLUR, is conducting the 3rd Annual Open Web Awards: Social Media Edition. The 2009 Open Web Awards is Mashable’s international online voting competition that covers major innovations in web technology and social media.The Lupus Foundation of America (LFA) is participating, and would like to take the category of “Best Non-Profit Use of Social Media.” We need you and your friends and family to help us win!How You Can HelpOnce a day, every day between now and November 15, you and your family, friends, and coworkers can nominate the Lupus Foundation of…

  • Seeking Men with Lupus 65+ Years Old to Participate in a Survey

    27 Oct 2009 | 12:08 pm
    This is a follow-up to our recent posting where we asked people with lupus to participate in a survey. The response so far has been very good. Now, BioVid has asked us to help them specifically recruit men with lupus who are 65+ years of age for this same survey. If you, or someone you know, may be a potential candidate, please follow the instructions below.Through November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health…
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    lupus « WordPress.com Tag Feed

  • Symptoms of Lupus?

    paranoid101
    6 Nov 2009 | 11:45 pm
    Ever since I’ve been diagnosed with lupus, my dentist, cardiologist and ophthalmalogist have said almost the same thing:  this changes things! The dentist informed me that lupus messes with my saliva production.  It decreases it which increases the chance of my teeth rotting because saliva protects the teeth in terms of bacteria. The cardiologist informs me that there’s a possiblity that the medications I’m taking for my hypertension could be the cause of the lupus but I need to check with my rheumatologist. The ophthalmalogist informs me that lupus manifests itself a…

  • What to do...

    autoimmunelife
    6 Nov 2009 | 8:21 pm
    Grrr….. so I hate the thought of cutting people out of my life. I want to say that first and foremost. There are a lot of reasons I feel that way, including if I were to cut out everyone who ever irritates me I’d be pretty damn lonely and I know it. However, I also know I need to take care of me, and the stress some people bring just makes me worse. There are some people who either never seem to know the right thing to say or who just don’t even try. I realize I’m not going to have everyone’s support 100% of the time. I also realize that I need to try not to…

  • NAC for Systemic Lupus Erythematosus

    jarebe
    6 Nov 2009 | 9:11 am
    The National Center for Complementary and Alternative Medicine at the NIH is funding a study at Upstate Medical University (Syracuse, NY) on the use of N-acetylcysteine (NAC) for Systemic lupus erythematosus (SLE). This study was motivated by some promising related research in Europe, where NAC is much more widely used and investigated than in the US. Here’s an excerpt from the study description: Systemic lupus erythematosus (SLE) is a chronic inflammatory disease which often has debilitating and potentially life-threatening consequences. The cause of SLE is unknown and current…

  • Welcome.

    Lindsey
    6 Nov 2009 | 7:13 am
    I am a 27 year old wife and mother of two, and now a Lupus patient.  I am  newly diagnosed as of Oct 14, 2009 with SLE.     This place is  for me to record my journey with this disease and the many ups and downs it brings, as well as share useful info I have been given for others with Lupus. I also hope to raise awareness to the many people who are unfamiliar with this disease and the havoc that it wreaks on so many lives and families.    If you have a loved one who is fighting Lupus, inform yourself and be there for them.  Support is key! Most of all I want a place to remind…

  • Autumn Blessings

    lupusranting
    5 Nov 2009 | 8:47 pm
    Despite all the crazy and sometimes crappy things that happen, I am able to count my blessings.  The
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    About.com Lupus

  • New lupus drug Benlysta passes second clinical trial

    4 Nov 2009 | 5:10 am
    The LA Times is reporting that Benlysta, a new drug designed to treat lupus, has passed an important second clinical trial. The drug's maker, Human Genome Sciences, plans to apply for FDA approval next year. If approved, Benlysta will be the first new treatment for lupus in 50 years. In the clinical trial, 43.2% of patients who took Benlysta in addition to their usual treatment saw their symptoms reduced, compared to 33.8% of people on a placebo.New lupus drug Benlysta passes second clinical trial originally appeared on About.com Lupus on Wednesday, November 4th, 2009 at 13:10:25.Permalink |…

  • Riquent No Longer a Possibility

    26 Feb 2009 | 8:51 am
    Earlier this month, La Jolla Pharmaceutical company halted the clinical trial of its possible lupus treatment drug Riquent. It was hoped the drug would stave off episodes of kidney inflammation caused by lupus. An independent monitoring board called use of the drug “futile” after reviewing preliminary trial data. No new drug for lupus has been approved in 50 years. There is just the smallest glimmer of hope, however, since La Jolla will have a chance to review the trial data and determine if its worth arguing against the monitoring board’s ruling. Among lupus patients, La Jolla was…

  • What's Your Type?

    15 Feb 2009 | 4:00 am
    Today we'd like to take a moment to welcome all of those women and men who have been newly diagnosed, or know someone who has been newly diagnosed, with lupus. Today we’re asking the question, what type of lupus do you have? And more importantly, did you know that there was more than one type? Lupus takes on several forms and can affect any part of the body, but it most commonly attacks the skin, joints, the heart, lungs, blood, kidneys and brain. So what are the various types? They are: Systemic Lupus Erythematosus Drug Induced Lupus Discoid Lupus Neonatal Lupus These are the most common…

  • Just the FAQs

    12 Feb 2009 | 4:00 am
    If you’ve been newly diagnosed with lupus, or have lived with it for some time, you may have dozens of questions related to the disease. In an effort to collect as many of those questions as we can, provide some short answers, and then link to more in-depth information, we have launched this Frequently Asked Questions page. Here you will discover questions that have been asked, with a link to provided answers. If you have questions that are not covered in this document, please e-mail me at lupus.guide@about.com. We hope to add to this page regularly, and welcome any and all questions you…

  • Research Studying Why Therapy Works for Some, Not Others

    10 Feb 2009 | 2:52 pm
    Interesting news: new lupus research will focus on why some therapies work well for some people with lupus, but not others. The focus of the research study, from the University of Rochester Medical Center in Rochester, N.Y., is on B-cells. B-cells are considered “key combat-ready immune cells.” B-cells are also often responsible for manufacturing auto-antibodies. The research should also open up the way the immune system works and mechanisms behind lupus. Researchers are specifically looking at how bone marrow produces B-cells, and what quality control checkpoints it imposes to ensure…
 
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    Chronic Chick Talk

  • Hit the Road Muscle Aches

    chronicchick
    5 Nov 2009 | 2:15 pm
    I’ve learned to be creative finding ways to reduce my pain level and it’s not been easy. I have a rice pack that I warm up numerous days during the day. Sure I could use a heating pad, but the rice pack offers moist heat which seems to sooth my muscles at least temporarily. If you’ve lived with chronic pain for any length of time you’ll do just about anything to get some relief from the pain, especially during a flare if you’ve been ‘blessed’ with lupus or fibromyalgia. I use to visit our local YMCA, but I quit going because of the price and the water…

  • Life Can Be a Royal Pain in the Moon

    chronicchick
    5 Nov 2009 | 2:08 pm
    It’s been a rollercoaster of a week for me. The computers have been a royal pain between the Linksys not working and the cable modem lights turning off and on. I think I have that issue fixed. Some days computers are more of a pain than they’re worth. Our cables been a royal pain for the last few weeks, but the last week has been really bad. The channels turn totally back then tell you to please stand by. The insanity with the cable is a really annoying at times. I have an area on my middle back that hurts pretty bad and well it’s also been a royal pain in the moon. I was…

  • What’s Your Holiday Plans This Year?

    chronicchick
    3 Nov 2009 | 10:20 pm
    The holidays are extremely stressful for me so I don’t cook the meal. I don’t like being so exhausted I cannot walk across the room at times. I cannot handle the stress of the cooking, cleaning and just dealing with people in general. We usually take a couple of dishes for the holiday. This year I’m going to bring some ice cream cookies. I’d like to take eggnog ice cream for the Thanksgiving and chocolate cherry ice cream for Christmas. My ice cream scoop broke a year ago and I’ve not replaced it. I’ve been using a big tablespoon and that gets old really…

  • Wordless Wednesday: Pumpkin Time

    chronicchick
    3 Nov 2009 | 9:31 pm
    Our pumpkin that we used a strobe light inside instead of a candle. We didn’t want to start a fire if we left it unattended. I just washed off the light when Halloween was over.

  • Home Phone Anyone?

    chronicchick
    31 Oct 2009 | 9:39 pm
    A couple of years ago, I turned off my home phone and went to just my cell phone. It was a good decision since I’m not a high phone user. I checked into a few different companies, but I decided to go with the company with roll over minutes. Checking out Mozoot would have helped make the decision. They have a lot of information on different phone services. In addition to having information about different phone services Mozoot has information about upcoming technologies. Once I signed the contract with the phone company they gave me a Motorola razor for signing the contract. The phone…
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    Dancing With Butterflies

  • Wandering Thoughts

    emmyrose
    23 Oct 2009 | 3:11 am
    I have been too busy lately and a lot of things happened in just a short span of time that somehow made me feel a bit chaotic. Don’t get me wrong I love the way things are happening in my life right now, I mean who would want to complain about my slow recovery from my longest lupus flare, certainly not me. It’s a slow recovery but I’ll rather have that than not to recover at all. My grandmother from my father side died a week ago and my father came home from overseas. Family matters are always complicated for me so I’ll rather not blog about it but still it was a sad…

  • Blue Advantage

    emmyrose
    23 Oct 2009 | 2:53 am
    I had my check up with my rheumatologist last Monday and the first thing he said to me was “you look great” wow, that felt so good after almost a year of having a lupus flare hearing your doctor said that only means that things are finally getting better. I am delighted that even my lab results are starting to be normal again although there are still things that may cause an alarm like my creatinine and protein leak on my urine, still things are way much better than it used to be. With this development, I can finally see brighter days to come but still it helps to have a Blue…

  • Better Be Safe

    emmyrose
    23 Oct 2009 | 2:52 am
    Discussions about the health insurance are on fire these days. A lot of people take for granted the importance of having a health insurance because they don’t anticipate what happens when sickness comes. Being a lupus patient for almost eight years now, I have experienced and valued the importance of having a health insurance, it is your security against the high cost of medications and without it, your finances are sure to suffer. Check your health insurance lead today and have a security for yourself and your family. It is always better to be safe and prepared than to be caught…

  • Purified Water

    emmyrose
    23 Oct 2009 | 1:53 am
    It’s been weeks since our country was badly hit by two strong typhoons that left Manila and the rest of Luzon devastated. I consider myself lucky and blessed that my family and loved-ones were spared with all the flooding but my heart goes out to the people whose house were destroyed and even the lives of their loved-ones were taken, it is such a tragedy and I’m glad that a lot of people are devoted into helping these affected people rise up from these dilemma and I guess they’ll be needing a water purifier like ukf8001axx because it is necessary for these people especially…

  • Birthday Blues

    emmyrose
    13 Oct 2009 | 7:31 am
    Another day had passed me by… I really shouldn’t be feeling sad or anything like that for I am so blessed that I have no right to complain but I guess this is just one of those days that I’m having some hormonal imbalance again and my lupus anxiety is making me feel all sad and lonely, or maybe, just maybe it’s just some birthday blues… Yeah, I’m turning a year older in a few days time and I should be feeling thankful, after all the past year had been so cruel in terms of me being sick all the time. Imagine being hospitalized for four times in just a span…
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    Despite Lupus

  • Movin' and Groovin' - Guest blogger

    6 Nov 2009 | 5:00 am
    I'm pleased to welcome guest blogger Suzanna Adams, Physical Therapist from the OSU (Ohio State University) Medical Center. Suzanna works in the Out-Patient Rehabilitation Services, and I recently asked for her two cents on physical therapy/exercise and lupus. Here's what she has to say - all great stuff!Exercise and LupusEverybody wants to be fit/healthy/lose weight/look better/feel better/have less stress/be happier. People with fancy degrees have performed double-blind studies showing that exercise can achieve all those things and more. If you have lupus or another inflammatory disease,…

  • Benlysta update - good news all around!

    4 Nov 2009 | 5:00 am
    Here's the latest in lupus drug research news: Human Genome Sciences announced that its drug BENLYSTA™ (belimumab) met its primary endpoint in BLISS-76, the second and final Phase 3 trial in seropositive patients with systemic lupus erythematosus (SLE). BENLYSTA is the first drug for lupus to reach Phase 3 and achieve positive results, in the largest randomized placebo-controlled clinical trials ever completed in patients with SLE. Positive results from the first BENLYSTA trial, BLISS-52, were announced in July. The data represent an important milestone for the lupus community, which has…

  • What are customers saying about the book "Despite Lupus"?

    2 Nov 2009 | 5:00 am
    Find out by clicking on our new and improved "Reviews and Feedback" menu category at the top of the website. You'll still find reviews from doctors, LFA, ALR (Alliance for Lupus Research), and a Success magazine writer...but scroll down and you'll find dozens of comments from readers just like you! People trying to make it through life with lupus - and doing a darn good job of it.To those of you who have taken the time to tell me what you think of the book - thank you! I love hearing from you, and I'm sure others will appreciate reading your feedback. Your comments have certainly inspired me,…

  • Skinny pens – my new pet peeve

    30 Oct 2009 | 5:00 am
    I have a renewed appreciation for Good Grip products. I’ve always known how handy they can be when my arthritic hands are throbbing and in pain, but now I’m thinking I should stick to the friendly-handled gadgets for good. I recently grabbed a smooth, super skinny, slippery pen out of my desk drawer and was shocked to find that my hands ached when I tried to write with it. It was practically useless! I’m not in a flare, and I haven’t had any symptom activity for months…but that pen was just too skinny. It took me right back to the days when wincing in pain while doing the simplest…

  • Educate yourself - help your doctor help you.

    28 Oct 2009 | 5:00 am
    Here's a snippet from a great article my friend sent me from CNN Health. Click here to read the entire piece. It's a good one!****"Women's health problems doctors still miss"By Harriet Brown, Health.comOctober 26, 2009Experts say more women than we know walk out of doctors' offices feeling that their symptoms haven't been taken seriously. They are told that their complaints are all in their heads or that everything will be fine if they would just stop worrying.The truth: Women who know something's wrong but can't get the help they need often have an autoimmune disorder, which occurs when the…
 
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    My Life Works Today!

  • Making Connections (Part One)

    maria
    5 Nov 2009 | 1:25 pm
    “My life has a great set of characters; I just haven’t figured out the plot.”                                                                                                     ~Ashleigh Brilliant I recently had the opportunity to work with a client in a coaching capacity, unrelated to lupus. She called me to help her objectively evaluate what her priorities are and chunk them into an achievable action plan that she will follow through with.  She actually knows everything she needs to…

  • A Shot in the Dark

    maria
    20 Oct 2009 | 10:10 am
    A friend of mine recently reacted to a pneumonia vaccination and that led me to confirm my decision to NOT get the H1N1 and flu vaccines this year.  Her reaction may have less to do with her R.A. and Lupus than the incorrect administering of the shot itself (yeah, I guess there is a ‘right way’ and a ‘wrong way’ to give someone a shot!)  I have two teenage daughters in high school and I’m expecting any day now to be confronted with the virus.  I consider myself pretty healthy overall and have no respiration involvement with my lupus, so I may not even qualify as a ‘high risk’…

  • World Arthritis Day 2009!

    maria
    12 Oct 2009 | 11:21 am
    Nothing brings home the challenges of stiff, achy joints and limited mobility quite like the dampness of a good Oregon winter.  We’ve been fortunate here so far in not stepping into that season full boar yet, but we know it’s coming. Today, awareness is upon those daily challenges for people living with osteoarthritis and all the other forms of arthritis as it applies to their experiences in the workplace. There are a number of bloggers (one fav is Rheumatoid Arthritis Guy  ) and other resources speaking on this topic, offering insight, tips, information and additional resources that…

  • North, to Seattle…go north, the walk is on!

    maria
    6 Oct 2009 | 1:37 pm
    A quick note for all of you who will be in the Seattle area on October 17th : The LFA Pacific NW Chapter will be hosting their annual Mad Hatter Walk N Roll for Lupus event on that day atMagnuson Park at Sandpoint Way.  Step out to join your community – both the lupus community as well as your Seattle one – and present lupus with energy and fun, something we know there is usually so little of in our daily lives.  Get your families involved, even if you didn’t raise funds (which doesn’t have to be much and does help our PNW).  The more we are present, the better our ‘present’…

  • Babysteps…

    maria
    1 Oct 2009 | 4:04 pm
    We’ve been busy trying to find, organize, correct and place all of our information onto the new blog.  Since we had to revamp everything – meaning we couldn’t just transfer information, we had to save it all and re-enter it! – things are going painfully slow.  There is some information we lost – such as any comments that we’ve received from you out there on past posts, some emails and resources.  We were sorry to discover that, but it gives us a new opportunity to learn more about everything and everyone all over again!  If you have commented on our blog in the past, we want…
  • add this feed to my.Alltop
    The Life of a 20-Something With Lupus

  • Long, Busy Day

    5 Nov 2009 | 6:09 pm
    Today was a pretty long day for me. It started off early this morning. I got up just before 7am and got ready to go out. I went to a friend's house to get my hair done. That whole process took about 3.5-4 hours. I was lucky enough to have my Dad pick me up and drop me off at the subway. I also had a dialysis clinic appointment today.I got to the hospital early, so I took the time to greet the nurses in my old in-centre dialysis unit. I was happy to see everyone and they were happy to see me. It's sad going back to that clinic, because I know that they're going to tell me about another person…

  • Ahhh...much better!

    3 Nov 2009 | 4:33 pm
    Today is a much better day for me than yesterday.I was stresed and sad yesterday for a number of reasons. I just knew that if one more minor thing happened to me...if a fly landed on my keyboard as I typed through teary eyes..I was bound to have a total and complete breakdown if uncontrollable scream-crying. Luckily it did not get that far.I was afraid to go to school. I had written a test 2 weeks prior and I was to get it back today. You ever have a test where you study and you study, but the material never seems to settle in your brain? That is what I was experiencing for this test. I…

  • Again?

    2 Nov 2009 | 6:04 pm
    I feel like I write a lot of "just one of those days" posts.My day was fine. I went to work today. Work was fine. Then, I went to school. School was also fine. Then, I came home. I was fine.I sat in bed and looked to the right. I saw my dialysis machine. I could feel the tears building up in my eyes.I see my machine everyday. In fact, I sometimes feel happy to see it, knowing that I do not have to go to the hospital frequently just to do dialysis. Other times, like today, I'm like...why do I even have to think this to myself? Why do I even have to be "happy" about not going to the…

  • I can't believe reading week is over!

    31 Oct 2009 | 8:58 pm
    +I did manage to get some much needed rest, but rest does not necessarily equate to sleep. For the past while I've been having trouble falling asleep, even when I'm on my machine. I'm going to see my doctor on Thursday so it is something that I'll definitely need to discuss with him when I see him.Yesterday I went to the movies with my friend. We saw the movie Good Hair. It's basically all the things black women go through to maintain their hair. It was all quite funny. Much of it applied to me...except for spending $1000 on a weave/hair piece. Not I, said the fly! I'd never spend that much…

  • Be careful where you enter your info!

    27 Oct 2009 | 8:12 am
    This coming from the girl who works for a BANK!On saturday night, i went online to purchase the UFC fight so I could watch it. Sure, it's pricey, but I really wanted to watch that particular fight card. So I googled "watch ufc yahoo". I clicked on the yahoo website and entered in my card information.Little did I realize until it was too late that this wasn't even the yahoo website! Look at the picture i just posted. The website says "YAOOO" instead of "YAHOO"! How could I be so dumb to fall for this scam!I called my credit card company immediately to inform them what had happened. They…
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