Lupus

  • Most Topular Stories

  • Molecular mechanisms underlying the prevention of autoimmunity by Roquin revealed

    Lupus News From Medical News Today
    16 Jul 2014 | 2:00 am
    Scientists at the Helmholtz Zentrum München, the Ludwig-Maximilians University of Munich (LMU) and the Technische Universität München (TUM) have moved an important step closer to understanding...
  • Lemonade For Momma to Benefit Lupus

    Lupus News
    29 Jul 2014 | 1:47 pm
    Lupus Foundation of America's Connecticut Chapter's Director of Development Corrianne Gagliardi, along with Carl Summa and his daughter Aubrey, talk about raising money for women with lupus through Lemonade For Momma.
  • Orphan Drugs & Rare Diseases 2014: Interview with Gunter Harms - Market Access & Public Affairs Director, Shire

    Lupus News
    31 Jul 2014 | 4:03 am
    SMi is proud to have Dr. Günter Harms from Shire, giving the opening address at this year’s Orphan Drugs and Rare Diseases conference. LONDON, UNITED KINGDOM, July 31, 2014 /EINPresswire.com/ -- SMi is proud to have Dr. Günter Harms, Market Access & …
  • S.L.E. Lupus Foundation Joins LRI in Amplifying Call for Better Access to Better Lupus Care

    Latest News from the S.L.E. Lupus Foundation
    ellen
    30 Jul 2014 | 4:43 pm
    Lupus Community to Sound Nation’s Patient Voice Despite the benefits of the Affordable Healthcare Act (ACA) many patients still face serious barriers to accessing quality care. read more
  • Christine’s “Unbirthday Party”! – SAVE THE DATE!

    But You Dont Look Sick? support for those with invisible illness or chronic illness
    christine
    29 Jul 2014 | 7:33 pm
    Christine’s “Unbirthday Party”! The Purple Party Dinner Dance - September 7th - SAVE THE DATE! It is my birthday and I am throwing the party… but you get the dinner, dancing, cake, music,swag bags, gifts and prizes! The best gift of all is our ability to come together and help others. Usually the birthday girl makes a wish. This year, help me make others wishes come true. All proceeds from this party will go to newly established But You Don’t Look Sick Foundation. The Party is Sunday September 7th. If you live near Long Island, NY This is…
 
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    Lupus News

  • Lemonade For Momma to Benefit Lupus

    29 Jul 2014 | 1:47 pm
    Lupus Foundation of America's Connecticut Chapter's Director of Development Corrianne Gagliardi, along with Carl Summa and his daughter Aubrey, talk about raising money for women with lupus through Lemonade For Momma.
  • Biomedical engineer looks at new applications for novel lupus drug

    24 Jul 2014 | 9:38 am
    Expanding on his work with a new drug that successfully treated lupus in mice, a biomedical engineer at the University of Houston has received a $250,000 grant to expand his research to a new version of the drug in an effort to treat a wider range of autoimmune diseases.
  • XTL Hopes To Begin Major Lupus Trial Next Year

    22 Jul 2014 | 12:53 pm
    XTLB is aiming to begin a Phase 2b clinical trial in the first half of 2015 with its hCDR1 peptide to treat patients with SLE.
  • Club Notes: July 23.

    20 Jul 2014 | 10:26 pm
    The Cary Photographic Artists will meet at 7 p.m. Wednesday, July 23, at The Cary, 122 E. Chatham St., Cary.
  • 10 Facts About Lupus

    18 Jul 2014 | 4:32 pm
    In the last few months, pop star Selena Gomez and actress Kristen Johnston have said they struggle with lupus, bringing new attention to the autoimmune disease.
 
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    But You Dont Look Sick? support for those with invisible illness or chronic illness

  • Christine’s “Unbirthday Party”! – SAVE THE DATE!

    christine
    29 Jul 2014 | 7:33 pm
    Christine’s “Unbirthday Party”! The Purple Party Dinner Dance - September 7th - SAVE THE DATE! It is my birthday and I am throwing the party… but you get the dinner, dancing, cake, music,swag bags, gifts and prizes! The best gift of all is our ability to come together and help others. Usually the birthday girl makes a wish. This year, help me make others wishes come true. All proceeds from this party will go to newly established But You Don’t Look Sick Foundation. The Party is Sunday September 7th. If you live near Long Island, NY This is…
  • No Rhyme or Reason. I have done all I can do.

    christine
    23 Jul 2014 | 9:38 am
    What to do when you have done everything, and still feel like crap. There are days when I feel really crappy. Maybe I didn’t take my meds on time or I overdid the day before. What I really hate is when I seem to have done everything right and I still feel so wrong. The […]
  • Christine is on Twitter @bydls and if you use the hashtag #spoonie you can connect with over 8,600 followers!

    admin
    21 Jul 2014 | 10:19 pm
      There is a growing community of our readers who have been using twitter to connect. These people are all fans of butyoudontlooksick.com and are all somehow connected to “The spoon theory”.  I personally (Christine) use the twitter account so many times you will be hearing directly from me. Lord knows the things I write, tweet and […]
  • Please Don’t Ask My Dad About Lupus!

    christine
    3 Jul 2014 | 1:08 pm
    If you ask my dad about Lupus he will give you a very seemingly odd answer.  He will always say “Getting a grip on Lupus is like trying to tie up Jello with a string” Most people laugh, look confused, or even attempt to think of how one would even begin to tie up Jello […]
  • I Never Thought I Would Use A Headset, Until I Tried The Jabra Extreme2 AE Extreme Noise Cancellation Headset

    christine
    1 Jul 2014 | 12:08 pm
    At a conference I recently attended, I was given this headset to try out.  After my recent stroke and history of migraines I usually hate in ear buds, or headsets because they never seem comfortable or the noise sets me off.  I was willing to give this headset a fresh new try when I heard […]
 
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    WordPress Tag: Lupus

  • A happy health update!

    jasminekeclipse
    17 Jul 2014 | 8:30 am
    Hey guys, happy Thursday! So yesterday I went to see a doctor for the first time in over a month, and it was a great visit. This was just a routine checkup, but she gave me some pretty good news, which is really rare, yet always welcome, right? As far as we know right now, I’m not in remission, but I’m also not in the middle of a flare either (amazing, I know!). We still have to get some labs and other tests done to make sure everything is fine and stable, but so far this is good news! She also said that we can start tapering off of the steroids that I’ve been on for almost…
  • How I make myself sick

    livingincurably
    17 Jul 2014 | 7:51 am
  • "GET" and The House Of Commons Gym Part 3

    The Other Side Of The Stretcher
    17 Jul 2014 | 7:26 am
         Graded Exercise Therapy and The House Of Commons Gym Part 3 In Memory Of M.E. Patient Brynmor John 18 April 1934 – 13 December 1988   Brynmor John Circa 1959 Compliments of Flying Officer Pam Gerrity   From The Nurse Point of View I will point out again like I have before, remember, I’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E. I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more…
  • Advocate to Educate

    Whitney Petit
    17 Jul 2014 | 7:10 am
    Over the last few weeks countless tweets, Instagram comments and emails have been pouring in stating
  • Throwback Thursday :Nick Cannon

    Reggrants
    17 Jul 2014 | 4:17 am
    It wouldn’t be throwback Thursday if I didn’t reminisce about  some fun interviews from the Past. This past December , I had the pleasure of interviewing Mogul in the making, Nick Cannon . Cannon and I discussed his many projects , how his life has changed since his Lupus diagnosis and life with his ever famous wife, Mariah Carey.  Click the link below to get the full story at MTV2 .com http://remotecontrol.mtv.com/2014/02/19/nick-cannon-bleu-magazine-lupus-photo-shoot-video/
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    Despite Lupus

  • The way a prednisone taper is SUPPOSED to work.

    30 Jul 2014 | 5:00 am
    Mention the phrase "taper off prednsione", and my body instantly tenses up. I know I've written about my attempts (some failed, some successful) to taper off steroids in the past, but I thought I'd tell you about my most recent experience. Primarily, because it's been so gloriously uneventful.You can read about my trials with prednisone tapers here, but I'll summarize by saying most of the time, they don't go well. It's an arduous task, to taper off those magic little pills. And I'd rather do just about anything than start a steroid taper. They all have the potential to be long, painful, and…
  • Mid-summer stock is here: the Pillbags are in full force!

    23 Jul 2014 | 5:00 am
    I'm happy to announce that my mid-summer inventory has arrived, putting the popular Amelia and Bordeaux Pillfolds back on the shelves. Hooray!You can also find the limited edition Peabody Pillpouch back in stock. The Peabody flew off the shelves last Spring, and I'm just restocking them now. Snap up a little whimsical birdie pouch before they're gone!
  • Sticking with the minis: Hair clips to the rescue!

    21 Jul 2014 | 5:00 am
    These little guys have been lifesavers over the past few months!As strands continue to fall from my head, I've been trying to style my hair as little as possible. That's where these baby clips work wonders. I just gently pull back a little hair from each side, secure with a clip, and I'm done.You can see from the second picture how I've "graduated" to these less-than-dime-size clips. But I won't complain. One day, I'm sure my hair will return en masse, and I'll be searching the house for the bigger clips you see here.Until then, I'll stick with my minis!Always looking to learn something new…
  • Upcoming Fibromyalgia Seminar: In Lombard, Illinois? I hope you can make it!

    16 Jul 2014 | 5:00 am
      Would you like to learn more about managing fibromyalgia? Attend a free “Get Educated” presentation on: “Why I Hurt: The Truth Behind Fibromyalgia" at theNUHS Whole Health Center - Lombard. When: Monday July 28th at 7:00pmWhere: NUHS Whole Health Center - Lombard    200 E Roosevelt Rd     Lombard, IL 60148       Building B, Room 539 Fibromyalgia is more than just a sentence to a life of chronic pain. There may be innovative and natural ways to manage your fibromyalgia that you haven’t…
  • Looking worn and in need of a pick-me-up? The Lovely Blog to the rescue!

    14 Jul 2014 | 5:00 am
    Chalk it up to the big birthday I had last month, or this latest bout of hair loss, but my skin has been feeling old. And looking old. And I was in need of a pickup.So when I was at the spa last month, I booked a facial. I couldn't wait to get in a room with an esthetician who could answer all of my burning questions:  Why did my skin all of a sudden stop cooperating? What about the redness around my cheeks? The uneven skin tone? The age spots? The dark circles? I mentioned that three years ago, I didn't seem to have any trouble with my skin. I've never worn foundation, or…
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    My Life Works Today!

  • Exploded View

    maria
    12 Jul 2014 | 12:00 pm
    In my defense, I have thought about posting here…but have been a little distracted:       You know how the instructions to put things like furniture together are sometimes shown in, what is referred to as, an “exploded view”? Bits and pieces of the final product appearing to fly apart from some sort of big bang in the center? That has been my last two months. Don’t get me wrong – it has been a lot of fun to have my daughters back in the home, at least in stuff if not their personal presence, and my nest is alive again. I admit to have made things worse by…
  • Exposed

    maria
    11 May 2014 | 3:55 pm
    The subject of visibility is stuck in my brain these days. Over the past years, I’ve watched the emerging patient advocacy movement grow and individuals living with health challenges were finding empowerment in sharing the voice of their experiences and needs. The “Patient as consumer” or “Be your own best advocate” jargon is heard much more regularly than before. New health care access no longer pushes patients to live in the shadows as much as we used to feel necessary. One of the reasons I didn’t have insurance for 16 years was because of my preexisting condition, leaving me a…
  • As my Uncle Georg would say, …

    maria
    10 Apr 2014 | 6:36 pm
    When he found himself in a conversation lull, he would simply throw out a “So-o-o-o-o...” (with a melodic lilt) to get things going again. I have been a little busy in the last month and am about to break my blogging rule of not disclosing my health out to the world. The reason I feel compelled to share it here is to work through some new things I’ve learned about myself when it comes to my health. If I aim to explore creating better health, then writing about the steps I take and trials I experience belong here. I suspect if you are reading this, then you already know that…
  • Celebrate International Women’s Day today

    maria
    8 Mar 2014 | 8:56 am
      Today is about honoring the amazing things women bring to the table of change.  
  • Blog Carnival at Partnership for Palliative Care: Why is sharing our health experiences necessary?

    maria
    3 Mar 2014 | 9:08 am
    In the late 90’s, I began my graduate program at the same time I received my diagnosis of lupus nephritis. As both of these events collided, I discovered how my life and my health experience were tightly woven together. This simple understanding about the relationship between body and mind can quickly unravel when faced with fear, barriers and shame. When I received my diagnosis, I learned how I cope with life and the particular strategies upon which I rely. My doctor suggested that I join a support group and I immediately responded with a “No thanks.” This surprise reaction to a…
 
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