Lupus

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  • EMD Serono and Massachusetts General Hospital Enter Collaboration on Lupus Research

    Latest News from the S.L.E. Lupus Foundation
    kristen
    4 Sep 2014 | 9:18 am
    EMD Serono Research and Development Institute, Inc., a subsidiary of Merck KGaA, Darmstadt, Germany, and Massachusetts General Hospital issued a press release announcing a collaborative research agreement with Massachusetts General Hospital (MGH) to further the understanding of Systemic Lupus Erythematosus and Lupus Nephritis pathogenesis. read more
  • Harnessing the power of lupus antibodies for use in targeted cancer therapy

    Lupus News From Medical News Today
    5 Sep 2014 | 12:00 am
    Yale Cancer Center researchers may have discovered a new way of harnessing lupus antibodies to sabotage cancer cells made vulnerable by deficient DNA repair.
  • Walk to End Lupus September 20

    Lupus News
    15 Sep 2014 | 7:16 pm
    The local lupus support group will host the sixth annual Lubbock Walk to End Lupus at 9 a.m. Saturday. Registration will start at 9 a.m. The walk will begin at 10 a.m. Awards will be given at 11:30 a.m. Individuals who raise money will receive rewards according to how much they raise.
  • 4i Co-Founder Lana Klein featured in Predictive Analytics Times

    Lupus News
    18 Sep 2014 | 7:00 am
    Analysis of health care industry changes and demands presented by a pre-eminent voice in management consulting and forensic analytics DEERFIELD, IL, USA, September 18, 2014 /EINPresswire.com/ -- Changes in the business model and regulatory …
  • Lupus Research Institute Launches NYC’s First Lupus Trials Fair

    Latest News from the S.L.E. Lupus Foundation
    kristen
    15 Sep 2014 | 9:05 am
    Hundreds Step Up For New Lupus Treatments NEW YORK, NY.  September 15, 2014 – Over 200 patients, families, physicians and scientists came together under one roof Saturday to learn, interact and participate in the drive for better lupus treatments at  New York City’s first Lupus Trials Fair launched by the Lupus Research Institute (LRI) and the S.L.E. Lupus Foundation. read more
 
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    Lupus News

  • Walk to End Lupus September 20

    15 Sep 2014 | 7:16 pm
    The local lupus support group will host the sixth annual Lubbock Walk to End Lupus at 9 a.m. Saturday. Registration will start at 9 a.m. The walk will begin at 10 a.m. Awards will be given at 11:30 a.m. Individuals who raise money will receive rewards according to how much they raise.
  • Lupus Research Institute Launches NYC's First Lupus Trials Fair

    15 Sep 2014 | 10:08 am
    Attendees interacted directly with researchers at eight of NYC's leading institutions -- sharing experiences, ideas and needs and learning about more than 80 opportunities to participate in studies needed to transform patient lives. emphasized, "Everyone in the lupus community - patients, scientists, researchers, healthcare providers, bio-pharmaceutical industry - each plays a role if we are to develop safer, effective therapies while moving toward prevention and a cure.
  • Carla Lamb on dealing with anorexia, bulimia and now lupus

    10 Sep 2014 | 8:20 pm
    Carla Lamb said a normal stroll through the garden is often difficult for her because of the effects of living with anorexia, bulimia and now in her case, lupus. A Newfoundland woman who lives with the effects of various eating disorders is now having to learn how to manage her condition coupled with a recent diagnosis of lupus.
  • Aurinia To Begin Trading On The Global Market

    2 Sep 2014 | 10:26 pm
    VICTORIA, B.C., Sept. 2, 2014 -- Aurinia Pharmaceuticals Inc. today announced that the Company has received approval by the NASDAQ Listing Qualifications Department to list its common shares on the NASDAQ Global Market .
  • Leigh Fields doing her part to battle lupus

    22 Aug 2014 | 4:58 pm
    The nightmares tormented Leigh Fields for nearly two years. She was 23 years old and had two young children and she'd just been told by her doctor that her lupus diagnosis was terminal.
 
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    Latest News from the S.L.E. Lupus Foundation

  • Lupus Research Institute Launches NYC’s First Lupus Trials Fair

    kristen
    15 Sep 2014 | 9:05 am
    Hundreds Step Up For New Lupus Treatments NEW YORK, NY.  September 15, 2014 – Over 200 patients, families, physicians and scientists came together under one roof Saturday to learn, interact and participate in the drive for better lupus treatments at  New York City’s first Lupus Trials Fair launched by the Lupus Research Institute (LRI) and the S.L.E. Lupus Foundation. read more
  • LRI's Unwavering Commitment to Innovation Keeps the Discoveries Coming

    kristen
    15 Sep 2014 | 6:50 am
    Two important Novel Research Grant discoveries exemplify why LRI's proven scientific strategy works: give talented researchers worldwide opportunities to take some risks and pursue bold, creative, novel research. LRI grant winner Dr. Jeffrey Rathmell notes, "We are moving on to bigger and bigger questions; that's how we know the original question in our LRI grant was a good one!" Read about how his results and those of Dr. Mariana Kaplan, another LRI Novel Research grant recipient, are advancing new lupus treatments to transform patients' lives. read more
  • Lupus Severity and Genotype Associated with Greater Risk of Pneumonia

    kristen
    11 Sep 2014 | 7:57 am
    Source: Internal Medicine News Lupus patients are at significantly greater risk of pneumonia than the general population, particularly those with more severe disease and those with a specific genotype, according to an analysis of 232 patients published online in The Journal of Rheumatology. read more
  • Sabotage as Therapy: Aiming Lupus Antibodies at Vulnerable Cancer Cells

    kristen
    9 Sep 2014 | 10:20 am
    Yale Cancer Center researchers recently published findings showing a possible way to use lupus antibodies to “sabotage” certain cancer cells. The study found that those cancer cells unable to repair damage to their own DNA were “significantly more vulnerable to attack by lupus antibodies.” Source: Yale Cancer Center By Vicky Agnew Yale Cancer Center researchers may have discovered a new way of harnessing lupus antibodies to sabotage cancer cells made vulnerable by deficient DNA repair. The findings were published recently in Nature’s journal Scientific Reports.
  • EMD Serono and Massachusetts General Hospital Enter Collaboration on Lupus Research

    kristen
    4 Sep 2014 | 9:18 am
    EMD Serono Research and Development Institute, Inc., a subsidiary of Merck KGaA, Darmstadt, Germany, and Massachusetts General Hospital issued a press release announcing a collaborative research agreement with Massachusetts General Hospital (MGH) to further the understanding of Systemic Lupus Erythematosus and Lupus Nephritis pathogenesis. read more
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    But You Dont Look Sick? support for those with invisible illness or chronic illness

  • What is the perfect gift to give, when you want to give the most memorable gift?

    christine
    26 Aug 2014 | 11:00 am
    My father turned 66 this summer and I decided to get him a gift that was both unique and memorable. He has a great interest in family history and saved some mementos from his mother’s estate. In an old worn out shipping box in the basement I found a small reel of old fashioned video […] The post What is the perfect gift to give, when you want to give the most memorable gift? appeared first on But You Dont Look Sick? support for those with invisible illness or chronic illness.
  • We have reached OVER 119,000 likes on our facebook page! Come join our #spoonie community!

    christine
    11 Aug 2014 | 6:47 pm
        WHoooo HHhhoooo!!!  Do a happy Dance! We have reached OVER 119,000 fans/ likes on our ButYouDontLookSick.com facebook fanpage! Thank you to all our readers, friends, and “spoonies” for making every part of our online community as supportive as it is. You guys are amazing! If you haven’t “liked” us yet on facebook come on […] The post We have reached OVER 119,000 likes on our facebook page! Come join our #spoonie community! appeared first on But You Dont Look Sick? support for those with invisible illness or chronic illness.
  • I am Sick, NOT Stupid.

    christine
    9 Aug 2014 | 8:09 pm
    Many years ago I heard a joke that was going around and it went like this. A guy was going home from the auto mechanic and just as he was passing a psychiatric center, a wheel fell off his car. He stopped, surveyed the situation and realized that the mechanic must have been distracted and […] The post I am Sick, NOT Stupid. appeared first on But You Dont Look Sick? support for those with invisible illness or chronic illness.
  • Painsomnia – Tick tock, tick tock, the clock keeps moving…

    christine
    5 Aug 2014 | 2:06 pm
    My mind won’t stop working. Tick, tock, tick, tock…many nights I just can’t sleep and the only companion I have is the clock and a teddy bear. Teddy doesn’t talk and I can’t get the clock to “SHUT UP”. I know, it’s just my brain trying to work things out but still I AM AWAKE. […] The post Painsomnia – Tick tock, tick tock, the clock keeps moving… appeared first on 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,…
 
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    WordPress Tag: Lupus

  • Lessons from Lyme: 9 Things You Need to Know about Lyme

    coleysadie
    9 Sep 2014 | 9:29 am
    Hey folks, Lymie here. Here are 10 facts about Lyme Disease that need to get around. The source is a
  • Eat for Wellness - Not for Weight Loss

    meridethcohrs
    9 Sep 2014 | 6:28 am
    Many people continue to struggle with the chicken vs egg mentality when it comes to nutrition.  Quite a few fall into the trap that they must eat ‘fat free’ and ‘low calorie’ foods to lose weight – and then they can be healthy and well.  The big red warning light for me with this approach is that these ‘weight loss’ foods are all highly processed and have a lot of additives that would make you cringe in fear if you knew they were there.  We get caught up by the bright lights and tag lines of clever marketers when true wellness is much more…
  • Thank you and you and you!!!!

    silentlyheardonce
    9 Sep 2014 | 6:24 am
    Originally posted on Us Verses Lupus: With still sixteen days to go you wonderful people have brought me up to $150.00.  I am truly amazed and grateful for your support. If I reach the $200 mark before the 25th I’ll do the ASL challenge earlier because it’s getting cold out there.  Those who said they don’t want me to do it don’t worry I will be fine.  I’ll run right into a hot shower after. I want to give a personal shout out to my contributors The first anonymous donor of $25 was me  so I don’t count. The second anonymous donor is truly anonymous gave $10 to help me hit the…
  • Thank you and you and you!!!!

    silentlyheardonce
    9 Sep 2014 | 6:23 am
      With still sixteen days to go you wonderful people have brought me up to $150.00.  I am truly amazed and grateful for your support. If I reach the $200 mark before the 25th I’ll do the ASL challenge earlier because it’s getting cold out there.  Those who said they don’t want me to do it don’t worry I will be fine.  I’ll run right into a hot shower after. I want to give a personal shout out to my contributors The first anonymous donor of $25 was me  so I don’t count. The second anonymous donor is truly anonymous gave $10 to help me hit the pledged…
  • Kinda Glad I Have Lupus...

    PoetryofPersuasion
    9 Sep 2014 | 1:44 am
    Today something happened that actually gave me a reason to be glad I have Lupus. I can blame it instead of old age. Several months ago, I noticed my best friend had a pair of OH!-so-cute glasses. When I asked her about them, she told me they weren’t prescription, but reading glasses that she had gotten cheap at Wally World (my term of endearment for the store that has everything, including the weirdest people on earth and a kazillion reasons to invoke Shopping Road Rage). I liked them so much I wanted a pair of my own. And I had to admit that reading the teeny, tee-nine-ee, itty-bitty…
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    Despite Lupus

  • Lupus hair loss: making the most of the moss

    17 Sep 2014 | 5:00 am
    I am thrilled to say that the hair I've lost due to last year's flare is growing back. Hurray!I have a very nice layer of hair all over my head - a layer that I affectionately refer to as "moss." It's fuzzy, thick, and a little curly - all the makings of world class ground coverage. Thus, my days of masking my bald spots and hiding my oh-so-white scalp between strands is officially over.Now, it's time to embrace the moss stage - appreciating the girth that it adds to my head, while creating new strategies for dealing with my evolving head of hair.  I keep thinking I should pay a visit to…
  • Book Review: "The Lupus Encyclopedia", by Dr. Donald E. Thomas Jr.

    12 Sep 2014 | 8:01 am
    Since the LFA DMV's Annual Maryland Summit is tomorrow, I thought it would be a perfect time to share my glowing review of Dr. Donald Thomas' new book, “The Lupus Encyclopedia”. Dr. Thomas is a presenter at tomorrow's event, and if you're attending the summit, be sure to stop by and pick up a signed copy of his book. I plan on having him sign my copy - and I might even ask to snap a photo with the famous author, too!Having known Dr. Thomas for several years, I had high expectations for his book. I knew it would be a thorough and accurate account of what lupus is, but I was…
  • "Switching off" autoimmunity. Can you imagine the possibilities for lupus!?!

    10 Sep 2014 | 5:00 am
    An exciting break though in the world of auto-immune diseases! I'm pleased to share the following articles with you - both sent to me by a couple of lupus friends. I was giddy each time I re-read them! A snippet of the first one is below, and you can read the second one here, which is a slight variation of the first. Either article will explain the exciting news that scientists have discovered how to switch off autoimmune diseases, although a lot of work lies ahead. Still, this is very, very promising!"Scientists have made an important breakthrough in the fight against…
  • LFA DMV Lupus Summit in Baltimore, MD - Saturday, Sept 13th - don't miss it!

    5 Sep 2014 | 5:00 am
    Looking forward to setting up shop at the upcoming LFA DMV Annual Maryland Summit on Saturday, Sept 13th! The Pillbags will be there - looking bright and cheery as usual, and I'll be there, anxious to catch up on the latest and greatest regarding research, treatment options, and symptom management techniques in the world of lupus. Hope you can make it, too!I'll have signed copies of Despite Lupus available as well. I never have enough copies on hand for this event, but I'll be bringing a slew of books hot off the press. Feel free to stop by and flip through a copy!Here are the details for the…
  • Lupus: knowledge is power; sleep is prodigious!

    3 Sep 2014 | 5:00 am
    "If at first you don't succeed...maybe you shouldn't try again. At least not for awhile."Remember how I was going to try a little mid-afternoon experiment last week, to see how flexible I could be with my afternoon nap? Well, it didn't go very well. Or rather, it went. But not the way I was hoping it would.About a week ago, I made plans to drop off a gift to a friend at the unheard hour of 2pm. (Unheard of because I never, ever plan to do anything at 2pm. At two o'clock, I'm either on my way to nap, furiously finishing up the task at hand so I can nap, or half way to the land of nod already.)…
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    My Life Works Today!

  • Quick Fall Update

    maria
    12 Sep 2014 | 12:20 pm
    I fully accept that blogging isn’t easy for me. I spend much more time away from the computer these days, as my Twitter and Facebook activity (or more precisely, inactivity) can illustrate. I do plan on returning, however, and writing about the experiences I will be having as the health education workshops, Tai Chi & Qigong classes and community-based projects get going. The posts will reflect my work in community-based wellness programs. I learn so much from those experiences where I get to face challenges side-by-side with others and those lessons are well worth sharing. I am ending…
  • 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.  
 
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    The Life of a 20-Something With Lupus

  • "Bad Luck Comes in Threes?"- Revisited

    3 Sep 2014 | 8:03 pm
    Nearly two years ago I blogged about some struggles I was going through. I talked about what was making me sad at the time as it relates to my health, my physical appearance, and my heart. If you haven't read it, here it is-"Back Luck Comes in Threes?".I read back on that entry today. In fact, I read it at least a few times a year.I talked about how upset I was with my appointment at the plastic surgeon's office. Let me be 100% clear-I was wronged.  I was left with a horrendous scar because of the negligence of hospital staff.  In spite of this, they didn't want to help me. Nobody…
  • Life

    31 Aug 2014 | 10:10 am
    The last number of weeks have been busy. Let me try and brief you on what's going on:Last month, I was successful in securing a part time, work from home HR Coordinator internship with a not-for profit organization. If you keep up with my blog, you'll know that I have been a bit frustrated and at a loss as to what or how I should go about securing an HR role, with my main obstacle being my lack of experience.  Thankfully, this company decided to take a chance on me and give me the opportunity to gain some valuable experience which I can put on my resume. This will hopefully help me in…
  • Prescription for Disaster!

    31 Jul 2014 | 9:06 pm
    Let's face it-the main topic of conversation for my blog is a topic that isn't necessarily the happiest of topics to discuss. In spite of some of the horror stories I've shared, you'll find that often times, I take a humorous approach to my stories. But why would you take a humorous approach to such a thing! This is serious! Well, there are a few answers to that. One, sometimes, some of the stories of things I've been through are so ludicrous that I actually find humour in them. Secondly...to me, at the end of the day, Lupus is something that I'm just going to have to deal with, and if I…
  • And today I accomplished...

    24 Jun 2014 | 6:46 pm
    ...nothing. Nadda. Ziltch.Today was one of those days that were doomed from the get go.I woke up today at the time I would normally wake up if I was gonna get up and go to work-5:45am-ish. I realized that my stomach was absolutely KILLING me. Why, you ask? One of the many benefits of being a woman-terrible, terrible CRAMPS.Now, I discussed my awful cramps with my gynecologist when I went to see her last month. She suggested I take a small dose of naproxen to help with the pain. I did this last month, but my creatinine has been on a steady increase- my baseline is in the 90s (or 9.0ish) and…
  • Gyne-NOOO

    30 May 2014 | 2:12 pm
    So first, let me get this out of the way.When you have a chronic illness/are immunosuppressed (lupus/kidney transplant, for example), it is absolutely a good idea to get your pap smears on an annual basis. Do as I say and not as I do, with the "as I do" being that it has been about 4-5 years since my last pap.Well, I had one just a few weeks ago.So, why did it take me so freaking long to get another pap??! Good question! I'll tell you.Let me be clear when I say that my first 1-2 paps were the things nightmares are made of. They were the most uncomfortable experiences EVER.  I prepared…
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