Lupus Masquerader

What is Lupus or SLE?

(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


Men And Lupus

(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 LFA
online 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 LupusLiving with LupusCoping 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

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

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?

(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

(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

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

(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