Lupus Masquerader

What is Lupus or SLE?

Thu, 29 Mar 2012 09:34:00 -0400

(LFA CT is providing this information as a public service and does not endorse or support any clinical trial over another)

Here is some information about lupus that some of you might not know. Lupus or SLE is a disease of the immune system, or an autoimmune disease. It can affect every part of the body, every organ. The word systemic means it affects every system or organ in the body. The word Lupus means wolf. The word Erythematosis means redness. The facial rash is supposed to resemble the bite of a wolf. Though it really looks like a butterfly mark in most cases.

Lupus is being studied. It is believed several things play a part in the development of this disease. 1- Immune system dysfunction, it goes out of wack. 2- Genetics, though there is no single lupus gene, it is believed that certian genes abnormalities that are present in the disease are are inherited. 3-Environmetal factors such as exposure to sun, stress, chemicals and viruses can trigger the onset of the disease.

There are a lot of symptoms of lupus some include; arthritis

-arthralgia

-fever

-anemia

-fatigue, weakness

-pleurisy

-mouth or nose ulcers

-photosensitivity

-skin rashes

For treatment see a doctor, preferably a Rheumatologist or Immunologist, who specializes in these types of disorders.

For more information visit lupus.org or view this full article at http://newsolio.com/what-is-lupus-or-sle-systemic-lupus-erythematosis,2142

Video

Thu, 15 Mar 2012 11:07:46 -0400

Men And Lupus

Thu, 01 Mar 2012 12:12:41 -0500

(LFA CT is providing this information as a public service and does not endorse or support any clinical trial over another)

In order to live your best life with lupus, you will want to know as much as you can about the disease, how it may affect you, and how to manage the symptoms. Also, the archive section of the Lupus Now®magazine Web site, at lupusnow.org, includes an advice column for men, called “Ask Dr. Paul,” as well as articles on lupus from the men’s perspective. Yes, Men Can Have Lupus!

A lot of misinformation exists about lupus—including the incorrect belief that lupus only occurs in women. Lupus can occur in anyone, male or female, of any age, including children, teenagers, and adults. We do not yet fully understand what causes lupus, but we do know that having lupus does not diminish your levels of testosterone, or affect your ability to perform sexually, or to become a father. However, medication side effects can play a role in these issues. The second discovery you may make is that it can be difficult to find information on lupus in men. It is true that many sources of lupus information will seem to be addressed to women. This is because the disease is more often seen in females than males (approximately nine of every 10 cases of lupus will be in females of child-bearing age).

Sexual interest may be affected by the symptoms of lupus, by the medications used to treat lupus, and by clinical depression that can occur in those with chronic illness. But it is possible to keep intimacy and tenderness between partners. Good communication with your partner can help you deal with negative self-perceptions or feelings of rejection. Couples may also wish to work with a licensed therapist for additional guidance.
Men with lupus are not less masculine, and do not experience impotence (erectile dysfunction) more than those without lupus. However, there is a connection between impotence or infertility and medications—in particular, cyclophosphamide (Cytoxan®). Before you begin taking any medications, talk to your doctor about how they may affect you.

The unpredictability of lupus, with the many symptoms that come and go, the unexpected flares and remissions, and the uncertainty of what each day will bring, can contribute to feelings of unhappiness, frustration, or anger. Usually these feelings subside with time as you learn to adjust to having lupus. In some cases, though, these negative feelings can be overwhelming and long-lasting. This can be an indication of clinical depression. We encourage you to reach out to other men who, like you, are learning to live and cope with lupus. You can connect with other men with lupus on the LFAonline message boards at lupus.org; in the “Ask Dr. Paul” column in the LFA’s magazine, Lupus Now®; and through the LFA network of chapters and support groups, at lupus.org/chapters.

You can find additional lupus information in the LFA Patient Education Series,Understanding Lupus, Living with Lupus, Coping with Lupus, and How Lupus Affect the Body in the Learn about Lupus Section of the LFA website.

For the full article visit http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnmen.aspx?articleid=109&zoneid=529

Followers

Tue, 28 Feb 2012 11:10:30 -0500

Hello Everyone! We are in desperate need of more followers to we can expand out donor base and get the word out about lupus. As of right now we have a mere 12 followers which i find unacceptable. Id like to have at least 25 followers by the end of march and im asking all of our followers to refer us to friends and family who use this site! Thank you and have a good day.

Fan Appreciation Night

Thu, 23 Feb 2012 21:22:00 -0500

Good Morning everyone! Are you a Connecticut Whale fan? or do you just love hockey? If you answered yes to either of those then you’re in luck. The Connecticut Whale are hosting Fan Appreciation Night and the LFA CT has your tickets. The game is April 13 at 7pm and tickets are 14 dollars. We are also looking for volunteers to help with the event. if you are interested please contact Corrianne Gagliardi at <cgagliardi.events@gmail.com>. WE HOPE TO SEE YOU THERE!

Women with RA, lupus have fewer children than they want. Why?

Fri, 17 Feb 2012 12:24:43 -0500

(LFA CT is providing this information as a public service and does not endorse or support any clinical trial over another)

New research suggests that more than half of women with autoimmune disease with rheumatoid arthritis (RA) and systematic lupus erythematous (SLE, or lupus) have fewer children than they had desired. According to a study published in the journal Arthritis Care & Research, it appears that some women diagnosed with RA or lupus during their childbearing years consciously choose not to have not to have children after they’ve been diagnosed. The main concern is that they may pass their disease to a child, that the medication they take to manage their condition may harm a child, or that their condition might render them unable to properly care for a child. The study found those with lupus who’d had fewer children that planned had higher rates of miscarriage than women who had the number of children they had originally planned.

“Beyond patient choice, however,” they write, “infertility in women with RA and pregnancy loss in women with SLE resulted in fewer children. To help women fulfill their childbearing goals, therefore, we must address patient education, as well as the underlying causes of infertility and pregnancy loss.”

Researchers surveyed 578 women with RA and 114 with lupus and categorized them according to their desire to have children at the time they were diagnosed. More than 60 percent reported they were no longer interested in having children at the time. Of those who were interested in children, 55 percent with RA and 64 percent with lupus had fewer children than originally planned.

For the full article visit http://www.washingtonpost.com/blogs/the-checkup/post/women-with-ra-lupus-have-fewer-children-than-they-want-why/2010/12/20/gIQAWx4LGR_blog.html

Latest "Royal Pains" Episode Highlights Lupus Nephritis

Thu, 09 Feb 2012 11:49:43 -0500

(LFA CT is providing this information as a public service and does not endorse or support any clinical trial over another)

Lupus Nephritis is inflammation of the nephrons, the structures within the kidney that filter the blood. Lupus Nephritis is a term used when lupus causes inflammation of your kidneys making them unable to properly remove waste from the blood. Having high levels of waste can build up in the blood swelling can also develop. If left untreated nephritis can lead to scaring and permanent damage to the kidneys.

Nephritis most often develops within the first 5 years after the symptoms of lupus start. It usually affects people between the ages of 20 and 40. It is estimated as many as 40% of all people with lupus and as many as 2/3 of all children with lupus will develop kidney problems and will require evaluation and treatment.

Symptoms of Lupus Nephritis include sudden and unexplained swelling in the extremities or eyes. Also look out for blood in urine, elevated blood pressure, foamy appearance in urination, and increased urination especially at night. For more information on Lupus Nephritis visit http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2297&zoneid=526 and for more on the original article visit http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=4338&zoneid=99

Lupus Love

Mon, 06 Feb 2012 11:45:41 -0500

February is now upon us, with Valentines Day only days away. There has always been a mix of emotions about this designated day of love, but for Lupus and love the emotions are positive, positive, positive!!

Dating and love can spark many questions when you have lupus. Wondering if a healthy relationship is possible when you have constant feelings of fatigue or self-consciousness. But don’t you dare stop looking for love just because you have lupus!

There is ALWAYS hope! We read a woman’s story about her experience with Lupus and Love. It’s amazing to see what she went through. This woman experienced heartbreak and shock, but through it all she found a love stronger than she imagined!

Read it for yourself and tell us what you think. From Nationals’ newsletter & the Lupus Now magazine The Dating Game

Are you inspired from this story to find love this Valentines Day or do you have a love story of your own?

Genes May Give Clues to Severe Form of Lupus

Fri, 03 Feb 2012 23:22:01 -0500

(LFA CT is providing this information as a public service and does not endorse or support any clinical trial over another)

Recently researchers have found a strand of DNA that has sped up the progression of lupus. These enhancers speed up the activity in neighboring genes. In the case of lupus, researchers identified a particular DNA sequence, called HS1.2, which may play a role in the most severe cases of the disease, which can cause joint pain, fever, skin rashes, hair loss and anemia. Finding this accelerator is a big step, because the discovery could lead to more effective treatments for lupus.

“Our results suggest that new drugs that turn off the enhancer HS1.2, or inhibit its effect on NF-KB, can stop the disease without the need for immunosuppressive drugs or other therapies with many side effects,” the study’s leader, Gianfranco Ferraccioli of the Catholic University of Sacred Heart in Rome, said in a university news release. “Moreover, the discovery of the role of this enhancer allows us to better classify patients and formulate a precise prognosis for each one moving toward more personalized care.”

With more research being conducted this is good news for the lupus community finding out about the accelerators could help find more ways to stop the accelerator and could decrease antibodies that attack the tissues and also decrease the aggressiveness of the disease.

For more information please visit http://news.health.com/2012/01/18/genes-may-give-clues-to-severe-form-of-lupus/#more-53088

Photo

Tue, 29 Nov 2011 12:14:29 -0500

Clinical Trials!!!

Tue, 29 Nov 2011 11:56:00 -0500

The Lupus Foundation of America Connecticut Chapter is pleased to announce two new clinical trials: Embody and Illuminate.

(LFA CT is providing this information as a public service and does not endorse or support any clinical trial over another)

The ILLUMINATE research studies will help researchers learn more about an investigational study drug being developed for the treatment of systemic lupus erythematosus. To find out more information, including the eligibility requirements for volunteer participants, go to the study web site www.illuminatestudies.com to LFA’s CCTE web site at http://www.lupus.org/clinicaltrials/Illuminate.html.

The EMBODY program is a global clinical research program testing the safety and effectiveness of an investigational study drug called epratuzumab in people with moderate to severe lupus. As part of the EMBODY program, two clinical research studies are being conducted at over 300 participating study sites in approximately 30 countries worldwide. Approximately 780 people are expected to participate in each study. To find out more information, including participants eligibility requirements, go to www.EMBODYprogram.com and the LFA CCTE Study Spotlight at http://www.lupus.org/clinicaltrials/study-spotlight.html.

Dear Lupus...: You Learn to Shake it Off

Wed, 16 Nov 2011 10:06:06 -0500

Dear Lupus...: You Learn to Shake it Off:

dearlupus:

Dear Lupus,

There are always the nonbelievers:

“you’re too pretty to be sick”

“everyone gets tired”

“if only she tried harder”

“you’re just too young to be sick”

“you’re just too smart”

“you’re lazy”

“you’re making it up/ it’s all your head”

I would like to now respond to a few of…

Talk Nautical, Baby: Sup, Lupus...

Tue, 15 Nov 2011 10:15:52 -0500

Talk Nautical, Baby: Sup, Lupus...:

talknauticalbaby:

So, this morning you decided to go on a rampage and make it look like I was seizuring. That was lovely! Thank you so much.

You now have to decided that only letting me sleep for three hours was a nice thing to do as well! You’re the greatest!

And now you want me to go on a rampage in the kitchen…

RESEARCH STUDY FINDS HIGHER NUMBERS OF PEOPLE WITH LUPU

Tue, 15 Nov 2011 10:05:46 -0500

www.lupus.org…

Increased Burden on Black Women

(November 8, 2011, Washington, DC) In an abstract being presented today during the American College of Rheumatology Annual Scientific Meeting in Chicago, Dr. S. Sam Lim of Emory University School of Medicine will present data showing that black women have a significantly higher incidence of systemic lupus erythematosus than most reports in the scientific literature. The data, gathered through the Georgia Lupus Registry that is funded by the Centers for Disease Control and Prevention (CDC), also indicates that overall prevalence of lupus in this population is higher than seen in previous studies, suggesting longer survival and/or more frequent diagnosis of lupus. According to Dr. Lim, lupus continues to affect significant numbers of people across racial and ethnic lines, but with a disproportionate burden on black women.

The Georgia Lupus Registry was designed to more accurately estimate the incidence and prevalence of lupus for blacks and whites in the two counties in and around the city of Atlanta, and is one of five U.S. population-based registries funded through the CDC. The Lupus Foundation of America (LFA) successfully advocated Congress to appropriate $18.4 million to support population-based registries as part of a broader national epidemiological study to understand the full impact of lupus on individuals and families. The registries are gathering data on various racial and ethnic groups to obtain a more accurate picture of how lupus affects all populations.

“This study represents the first step of a long and complicated process required to obtain a clear picture of lupus and its impact,” said Sandra C. Raymond, President and Chief Executive Office of the Lupus Foundation of America. “The data from this study are only one piece of a much larger puzzle. Additional information is needed for all forms of lupus and all groups believed to be at high risk for the disease, including Native Americans, Hispanics, and Asians. Studies on these populations have just been initiated and will not be completed for several years.”

“Estimates for the number of people affected by lupus are outdated and have varied widely due to the use of different case definitions, limited sources for case ascertainment, and small source populations,” said Dr. Lim. “This study is needed to better understand and measure the burden of the illness and the social and economic impacts of the disease, and to stimulate additional private investment by industry in the development of new, safe, and effective therapies for lupus.”

In the Georgia study, trained investigators surveyed medical records to identify cases of lupus that were being treated in hospitals and by rheumatologists, nephrologists, and dermatologists. The reports from this initial analysis, however, only included cases of lupus that met rigid criteria established by the American College of Rheumatology (ACR) to ensure uniformity of data in research. Not included in the data are cases that were managed by other medical specialists or general practice physicians, mild cases where the individual is not undergoing medical care, or undiagnosed cases. However, results from the Georgia Lupus Registry study provide additional and more accurate evidence that lupus is a significant and complex disease that requires a long and difficult process to diagnose due to vague symptoms and an unclear pattern of disease activity.

# # #

About Lupus
Lupus is an acute and chronic autoimmune disease in which the immune system is out of balance, causing inflammation and tissue damage to virtually any organ in the body. Lupus can be unpredictable and potentially fatal. Its health effects include heart attacks, strokes, seizures, miscarriages, and organ failure.

About the LFA
The LFA is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its national network of chapters, branches, and support groups conduct programs of research, education, and advocacy.

About the LFA National Research Program

The Lupus Foundation of America’s National Research Program, BringingDown the Barriers,® is dedicated to addressing research issues that have obstructed basic biomedical, clinical, epidemiological, behavioral, and translational lupus research for decades. The LFA’s National Research Program is unique because it directs LFA funding to areas of research where gaps exist in the understanding of lupus and promising areas of study in which other public and private organizations have not focused their efforts. Using a national three-pronged strategy the LFA and its national network are committed to advancing the science of lupus by: funding investigators through a peer-reviewed grant program; directly conducting special research initiatives; and advocating for increased investment by federal and state governments, as well as the nation’s pharmaceutical and biotechnology industries. For more information about LFA’s National Research Program, visit www.lupus.org/research.

About the ACR Annual Scientific Meeting
The ACR Annual Scientific Meeting is the premier meeting in the field of rheumatology involving more than 10,000 rheumatology professionals.

Media Contacts:
Maggie Maloney, maloney@lupus.org, 202-212-6766

Duane Peters, peters@lupus.org, 202-349-1145

Maggie Maloney

Public Relations Manager

Lupus Foundation of America, Inc.

2000 L Street, N.W., Suite 410

Washington, DC 20036

Main (202) 349-1155

Direct (202 212-6766

Cell (202) 492-7486

Fax (202) 349-1156

♥Umm... its me??!♥: Prednisone

Sat, 22 Oct 2011 15:23:33 -0400

♥Umm... its me??!♥: Prednisone:

miss-lovely-steph:

It’s a love-hate relationship. Mostly hate though. So on September 18 they kicked my prednisone from 30 to 60. As of October 18 I was allowed to take 40 mg and next week the rheumatologist said I can take 30 mg. I am wondering if I am getting off prednisone or if she’s tricking me back to 30… I…

Our Night of Thanks at the Governor’s Residence was a...

Thu, 20 Oct 2011 18:14:00 -0400

Our Night of Thanks at the Governor’s Residence was a success, it was a great turnout. We want to extend our deepest thanks to Governor Dannel Malloy and his wife Cathy for allowing us into their home and gracing us with their presence. It was a great day for Lupus Awareness in this Connecticut.

We also want to extend our thanks to our sponsors:

Cafe Louse of West Hartford for providing the wonderful food, The House of Flora of West Hartford for their amazing flower arrangements, Hartford Distributors for providing the beer and wine and last but not least, Sir Speedy Printing of New Britain their services and precision to quality and philanthropy are unmatched in Connecticut.

Thank you to all who showed up, we hope you had as much fun as we did!

Advances in Lupus Research online Webinar coming up!!!

Thu, 20 Oct 2011 11:35:11 -0400

Advances in Lupus Research online Webinar coming up!!!:

We invite you to join Dr. Susan Manzi from Allegheny General Hospital as she leads a discussion with Dr. Michael Lockshin and Dr. Jane Salmon from Hospital for Special Surgery on the state of lupus research and new lupus treatments.

They always cheer you up ! :)

Fri, 14 Oct 2011 16:15:06 -0400

They always cheer you up ! :)

I love the whistling, always cheers you up!

Fri, 14 Oct 2011 12:05:06 -0400

I love the whistling, always cheers you up!

andfakethewayiholdyou: As demonstrated by my thermometer (re:...

Fri, 14 Oct 2011 10:00:05 -0400

andfakethewayiholdyou:

As demonstrated by my thermometer (re: my last reblog) That’s 103.6F btw

As long is it’s under 40/104 I’m happy and I’m allowed to not visit the hospital. But as you can imagine, it doesn’t make me feel good.

At least I’m hot right now (being cold is not such a good thing when you have a fever, it normally means your temperature is just rising) so it should stay fairly stable.

It does mean I have to keep checking it every few hours though, because if it does go above 40 I have to go to the hospital as it’s pretty dangerous to have a fever that high.