If you are like most people with lupus, you have experienced pain at some time, especially in your joints and muscles, or in the form of headaches. However, the types of pain associated with lupus usually go away when the inflammation and disease activity are brought under control.
Learn some approaches to pain relief.
And we'd love to hear from you. What works for you?
Showing posts with label lupus. Show all posts
Showing posts with label lupus. Show all posts
April 23, 2010
March 05, 2010
Can Blood Tests Help Us Learn about CNS Lupus (Lupus and the Brain)?
Some people with lupus can develop mild or, more rarely, severe inflammation of the brain, also called Central Nervous System lupus (CNS lupus). Very rarely, people can develop serious problems from CNS lupus such as seizures or strokes. Sometimes it is hard to know the difference between CNS lupus and problems that might be due to fatigue, depression, or migraine headaches. Therefore, it would be helpful to have blood tests that could tell the difference, so appropriate treatments could be given.
What did the researchers learn?
What did the researchers learn?
April 03, 2009
Do You Want to See How / Where Lupus Affects the Body? Then Try the LFA's New Interactive Tool.
The Lupus Foundation of America has created an interactive tool
-- The Impact of Lupus on the Body -- that allows users to better understand the many ways lupus can affect the body.
The interactive tool depicts a human body, and as users scroll over each organ system, it becomes highlighted and features a text box with a brief description of how lupus can damage that particular organ or system.
Individuals will also be directed to complete the "Could You Have Lupus?" symptom checklist and answer a series of health questions based on current and past medical history. After completing the symptom checklist individuals have the option to print out a report with their answers to share with their doctor.
Try our new tool today, and learn "the impact of lupus on the body."
-- The Impact of Lupus on the Body -- that allows users to better understand the many ways lupus can affect the body.
The interactive tool depicts a human body, and as users scroll over each organ system, it becomes highlighted and features a text box with a brief description of how lupus can damage that particular organ or system.
Individuals will also be directed to complete the "Could You Have Lupus?" symptom checklist and answer a series of health questions based on current and past medical history. After completing the symptom checklist individuals have the option to print out a report with their answers to share with their doctor.
Try our new tool today, and learn "the impact of lupus on the body."
May 13, 2008
MSNBC Debuts a New Series Called "Medical Mysteries"; Lupus is Featured First.
Robert Bazell, NBC News Chief science correspondent, debuted a new series on Monday, May 12, called "Medical Mysteries," the focus of which is autoimmune diseases. Lupus was the first autoimmune disease to be featured.
Read Robert Bazell’s piece here. In this piece, the Lupus Foundation of America's Website, lupus.org, was recognized as "an excellent source of information."
Watch MSNBC’s 2 minute video clip, featuring Jennifer Pearce, a person living with lupus.
Read Robert Bazell’s piece here. In this piece, the Lupus Foundation of America's Website, lupus.org, was recognized as "an excellent source of information."
Watch MSNBC’s 2 minute video clip, featuring Jennifer Pearce, a person living with lupus.
February 06, 2008
The Dating Game: Having Lupus Doesn't Mean Saying No to Love
Hi everyone.
Even though Punxsutawney Phil saw his shadow, which means 6 more weeks of winter, it sure doesn't feel like it. It's going to be an unusually warm day here in DC. Plus, it's the day after Super Tuesday -- and it's DC -- so there's lots to talk about in our nation's capital.
And speaking of things to talk about, I have an article I wanted to share with you. It's very timely, especially since Valentine's Day is 8 days away.
The article -- The Dating Game -- was written by Mary Dixon Lebeau, and appeared in the Summer 2007 issue of Lupus Now magazine. I will post the first half of the article here, and then link to the article in its entirety.
Wishing you a great Wednesday.
Until next time, Wick
The Dating Game
For Erica DeMeerleer, Valentine’s Day 2002 was anything but romantic. In fact, the events of that week nearly broke her heart.
DeMeerleer, an account executive for Comcast, was 25 and involved in a two-year relationship at the time. She had moved from her hometown of Bellingham, WA, to Seattle for her work, but was trying to maintain the relationship long distance.
“It was a period of high stress for me,” DeMeerleer recalls. “I was adjusting to the new home, struggling with high rent payments, and trying to keep my relationship going.” She was also coping with incredible pain, which she thought was a symptom of the rheumatoid arthritis she had been diagnosed with six years earlier.
Then came the week that shook DeMeerleer’s world. “Three days before Valentine’s Day, my boyfriend broke up with me. Then a few days afterward, my doctors told me I had lupus,” she says.
“I was sure nobody would want to deal with my problems and that I would probably always remain single,” she says. “I remember thinking no one would ever love me.”
Learning that you have lupus is always hard, but when you’re single, you face an additional set of fears. You may struggle with when and how to discuss lupus with a potential partner -- and worry about how he’ll react once you do. You may even wonder if you could keep up a healthy romance at all, especially when you’re feeling fatigued or self-conscious. Is it possible to look for love -- and actually find it -- while dealing with all this?
Fortunately, the answer is a resounding yes. The key is the same as in any relationship: communication. "The number one issue in any relationship is communication," says Robert Phillips, Ph.D., founder of The Center for Coping in Hicksville, N.Y. and author of Successful Living With Lupus and Coping With Lupus. "With lupus patients, it depends on how well the person diagnosed is able to communicate what they’re experiencing or what they need without applying pressure to the other person."
It may take work, but with good communication, lupus patients can have a “happily ever after” -- as DeMeerleer can attest. Just one year after that heartbreaking Valentine’s week, DeMeerleer met Zeb and fell in love; the couple celebrated their second wedding anniversary last October.
“It works because he’s very open and honest, which compels me to tell it like it is,” DeMeerleer says. Honesty is key to the strength of their relationship. “We’re working hard on something great,” she says.
Sharing and caring
Usually the road from “glad to meet you” to “happily ever after” is a long one, and in the best cases, a variety of conversations will be held along the way. For singles with lupus, one of those conversations will reveal the diagnosis. This discussion, however, does not have to happen right away.
“There is no rule of thumb for when,” says Phillips. “It really shouldn’t be a part of your introduction. For example, you wouldn’t say, ‘Hi, glad to meet you, I have lupus.’ I suggest you wait to get to know the person and see if there’s chemistry.”
“When you reach a point in the relationship when you’re naturally sharing things about your life, lupus would be one of the things you share,” he adds.
Eileen Lynch, a Seattle-based paralegal, understands the reluctance to have such a conversation. Diagnosed at 22, Lynch avoided dating while she struggled to accept her condition. “I shied away from dating because I didn’t want to burden someone,” she recalls. “Then, when I returned to dating, I didn’t have successful relationships because I was so guarded and couldn’t open up.”
But a friend opened Lynch’s eyes to the opportunity she had been given. “He told me that I was actually lucky because I had a built-in meter,” Lynch says. “If someone didn’t want to be with me because of lupus, then he wasn’t good enough for me to begin with.” Lynch decided to put that meter to the test and started dating again, meeting men through friends or on online dating sites.
###
Are you enjoying the article so far? If so and you would like to read it in its entirety, please visit The Dating Game on lupus.org.
Even though Punxsutawney Phil saw his shadow, which means 6 more weeks of winter, it sure doesn't feel like it. It's going to be an unusually warm day here in DC. Plus, it's the day after Super Tuesday -- and it's DC -- so there's lots to talk about in our nation's capital.
And speaking of things to talk about, I have an article I wanted to share with you. It's very timely, especially since Valentine's Day is 8 days away.
The article -- The Dating Game -- was written by Mary Dixon Lebeau, and appeared in the Summer 2007 issue of Lupus Now magazine. I will post the first half of the article here, and then link to the article in its entirety.
Wishing you a great Wednesday.
Until next time, Wick
The Dating Game
For Erica DeMeerleer, Valentine’s Day 2002 was anything but romantic. In fact, the events of that week nearly broke her heart.DeMeerleer, an account executive for Comcast, was 25 and involved in a two-year relationship at the time. She had moved from her hometown of Bellingham, WA, to Seattle for her work, but was trying to maintain the relationship long distance.
“It was a period of high stress for me,” DeMeerleer recalls. “I was adjusting to the new home, struggling with high rent payments, and trying to keep my relationship going.” She was also coping with incredible pain, which she thought was a symptom of the rheumatoid arthritis she had been diagnosed with six years earlier.
Then came the week that shook DeMeerleer’s world. “Three days before Valentine’s Day, my boyfriend broke up with me. Then a few days afterward, my doctors told me I had lupus,” she says.
“I was sure nobody would want to deal with my problems and that I would probably always remain single,” she says. “I remember thinking no one would ever love me.”
Learning that you have lupus is always hard, but when you’re single, you face an additional set of fears. You may struggle with when and how to discuss lupus with a potential partner -- and worry about how he’ll react once you do. You may even wonder if you could keep up a healthy romance at all, especially when you’re feeling fatigued or self-conscious. Is it possible to look for love -- and actually find it -- while dealing with all this?
Fortunately, the answer is a resounding yes. The key is the same as in any relationship: communication. "The number one issue in any relationship is communication," says Robert Phillips, Ph.D., founder of The Center for Coping in Hicksville, N.Y. and author of Successful Living With Lupus and Coping With Lupus. "With lupus patients, it depends on how well the person diagnosed is able to communicate what they’re experiencing or what they need without applying pressure to the other person."
It may take work, but with good communication, lupus patients can have a “happily ever after” -- as DeMeerleer can attest. Just one year after that heartbreaking Valentine’s week, DeMeerleer met Zeb and fell in love; the couple celebrated their second wedding anniversary last October.
“It works because he’s very open and honest, which compels me to tell it like it is,” DeMeerleer says. Honesty is key to the strength of their relationship. “We’re working hard on something great,” she says.
Sharing and caring
Usually the road from “glad to meet you” to “happily ever after” is a long one, and in the best cases, a variety of conversations will be held along the way. For singles with lupus, one of those conversations will reveal the diagnosis. This discussion, however, does not have to happen right away.
“There is no rule of thumb for when,” says Phillips. “It really shouldn’t be a part of your introduction. For example, you wouldn’t say, ‘Hi, glad to meet you, I have lupus.’ I suggest you wait to get to know the person and see if there’s chemistry.”
“When you reach a point in the relationship when you’re naturally sharing things about your life, lupus would be one of the things you share,” he adds.
Eileen Lynch, a Seattle-based paralegal, understands the reluctance to have such a conversation. Diagnosed at 22, Lynch avoided dating while she struggled to accept her condition. “I shied away from dating because I didn’t want to burden someone,” she recalls. “Then, when I returned to dating, I didn’t have successful relationships because I was so guarded and couldn’t open up.”
But a friend opened Lynch’s eyes to the opportunity she had been given. “He told me that I was actually lucky because I had a built-in meter,” Lynch says. “If someone didn’t want to be with me because of lupus, then he wasn’t good enough for me to begin with.” Lynch decided to put that meter to the test and started dating again, meeting men through friends or on online dating sites.
###
Are you enjoying the article so far? If so and you would like to read it in its entirety, please visit The Dating Game on lupus.org.
October 31, 2007
Latest Updates Regarding Lupus Advocacy on Capitol Hill
Hello. My name is Sara Chang and I would like to give you some updates on a few things the LFA Government Relations Department is working on with Capitol Hill. Congress is hoping to recess for the year just before Christmas, so we have about a month to get our voices heard!
Labor-HHS-Education Appropriations Bill
Regarding the Labor-Health and Human Services-Education Appropriations bill (Labor-HHS-Education), the Senate Appropriations Committee has included funds for the Office of Women’s Health to develop and implement a lupus awareness and education campaign aimed at reaching health care professionals and the general public. The Committee has also recommended increasing funding to expand lupus epidemiology research at the Centers for Disease Control and Prevention.
The House of Representatives passed its version of the Labor-HHS-Education Appropriations legislation on July 19th. The Senate passed its version on October 23rd. The Senate and House of Representatives hope to negotiate the difference between the two bills on November 1st. The Senate has mentioned it hopes the Labor-HHS-Education Appropriations bill will be the one of the first of the 12 appropriations bills sent to the President.
Lupus REACH Amendments
The Lupus Research, Education, Awareness, Communications, and Healthcare (REACH) Amendments legislation, S.1359/H.R.1192, is extremely important to people with lupus, their families, and physicians. The Lupus REACH Amendments was introduced in the Senate by Senator Patty Murray (D-WA) and Senator Robert Bennett (R-UT) and it was introduced in the House of Representatives by Congressman Kendrick Meek (D-FL) and Congresswoman Ileana Ros-Lehtinen (R-FL).
S. 1359/H.R. 1192 will help our nation make considerable strides toward bridging the gaps in lupus research, education, and awareness. Health professionals and researchers will be able to significantly enhance the lives of those affected by lupus. Currently there are 67 cosponsors in the House and 15 in the Senate, but we need to have at least 100 in the House and 25 in the Senate by the end of the year!
Take action NOW: www.capwiz.com/lfa
Lupus Advocacy Day 2008
Some of you may have heard about Lupus Advocacy Day 2007. During the LFA’s 2007 Lupus Advocacy Day, 350 participants from 31 states met with 146 legislators. We expect the 2008 Lupus Advocacy Day to be even more influential!
The date has been set for Lupus Advocacy Day 2008. Join the LFA in Washington, DC March 10-11, 2008 and make your voice heard! Advocates and LFA members will travel to Capitol Hill to meet with Members of Congress.
Go to www.lupus.org/advocacy to sign up TODAY to become a lupus e-Advocate. Pass this information to everyone you know!
Enrollment for Medicare Part D
Lastly, Medicare Part D enrollment is starting soon. As you know, Medicare Part D is the prescription drug benefit resulting from the Medicare Modernization Act of 2003, which provides all Medicare beneficiaries with the option to add prescription drug coverage. You may sign up when you first become eligible for Medicare (three months before the month you turn age 65 until three months after you turn age 65). If you receive Medicare due to a disability, you can join from three months before to three months after your 25th month of cash disability payments.
The next opportunity to enroll in Medicare Part D will be from November 15, 2007 to December 31, 2007. If you are currently enrolled in a plan, now is also the time to check for any changes that might have been made to your plan! For more information go to http://www.cms.hhs.gov/center/openenrollment.asp
If you have any questions about what is happening on Capitol Hill that may affect people with lupus, please contact me, Sara Chang, at chang@lupus.org. Thank you!
Labor-HHS-Education Appropriations Bill
Regarding the Labor-Health and Human Services-Education Appropriations bill (Labor-HHS-Education), the Senate Appropriations Committee has included funds for the Office of Women’s Health to develop and implement a lupus awareness and education campaign aimed at reaching health care professionals and the general public. The Committee has also recommended increasing funding to expand lupus epidemiology research at the Centers for Disease Control and Prevention.
The House of Representatives passed its version of the Labor-HHS-Education Appropriations legislation on July 19th. The Senate passed its version on October 23rd. The Senate and House of Representatives hope to negotiate the difference between the two bills on November 1st. The Senate has mentioned it hopes the Labor-HHS-Education Appropriations bill will be the one of the first of the 12 appropriations bills sent to the President.
Lupus REACH Amendments
The Lupus Research, Education, Awareness, Communications, and Healthcare (REACH) Amendments legislation, S.1359/H.R.1192, is extremely important to people with lupus, their families, and physicians. The Lupus REACH Amendments was introduced in the Senate by Senator Patty Murray (D-WA) and Senator Robert Bennett (R-UT) and it was introduced in the House of Representatives by Congressman Kendrick Meek (D-FL) and Congresswoman Ileana Ros-Lehtinen (R-FL).
S. 1359/H.R. 1192 will help our nation make considerable strides toward bridging the gaps in lupus research, education, and awareness. Health professionals and researchers will be able to significantly enhance the lives of those affected by lupus. Currently there are 67 cosponsors in the House and 15 in the Senate, but we need to have at least 100 in the House and 25 in the Senate by the end of the year!
Take action NOW: www.capwiz.com/lfa
Lupus Advocacy Day 2008
Some of you may have heard about Lupus Advocacy Day 2007. During the LFA’s 2007 Lupus Advocacy Day, 350 participants from 31 states met with 146 legislators. We expect the 2008 Lupus Advocacy Day to be even more influential!
The date has been set for Lupus Advocacy Day 2008. Join the LFA in Washington, DC March 10-11, 2008 and make your voice heard! Advocates and LFA members will travel to Capitol Hill to meet with Members of Congress.
Go to www.lupus.org/advocacy to sign up TODAY to become a lupus e-Advocate. Pass this information to everyone you know!
Enrollment for Medicare Part D
Lastly, Medicare Part D enrollment is starting soon. As you know, Medicare Part D is the prescription drug benefit resulting from the Medicare Modernization Act of 2003, which provides all Medicare beneficiaries with the option to add prescription drug coverage. You may sign up when you first become eligible for Medicare (three months before the month you turn age 65 until three months after you turn age 65). If you receive Medicare due to a disability, you can join from three months before to three months after your 25th month of cash disability payments.
The next opportunity to enroll in Medicare Part D will be from November 15, 2007 to December 31, 2007. If you are currently enrolled in a plan, now is also the time to check for any changes that might have been made to your plan! For more information go to http://www.cms.hhs.gov/center/openenrollment.asp
If you have any questions about what is happening on Capitol Hill that may affect people with lupus, please contact me, Sara Chang, at chang@lupus.org. Thank you!
October 29, 2007
Keeping a Lupus Flare at Bay
Doctors have identified healthy habits that can help you avoid triggering a lupus flare.
- Always take your medication as prescribed.
- Keep your doctor's appointments even if you are feeling well.
- Avoid taking sulfa drugs (sulfonomides) that are used to treat infections such as bronchitis and urinary tract infections.
- Limit your exposure to sunlight; apply sunscreen before going outside during the day, and wear sun-protective clothing and a wide-brimmed hat.
- Reduce your risk of infections.
- Get plenty of rest.
- Do not smoke.
August 28, 2007
'Flare' for Fashion
So part of my job is to see what other lupus organizations are doing in terms of education and awareness of this disease. I recently came across this in Facebook and wanted to share with you, as it's a pretty cool idea.
The Lupus Flare Foundation in Ontario, Canada is hosting its 3rd annual fund-raising event, 'Flare' for Fashion. Just what is 'Flare' for Fashion?
'Flare' for Fashion is an innovative and entertaining event that showcases the latest in fashion trends with famed fashion designers and fashion retail houses. The gala attracts celebrities along with Toronto's elite. Most importantly, it puts a face to a debilitating disease by sharing glimpses of heartfelt stories of people who live with lupus.
Simply put ... 'Flare' for Fashion is part contest, part fashion show and part public awareness campaign. Local fashion designers submit applications, which are then narrowed to a field of four contestants, by a judging panel. The final four contestants have photos and videos of their entries posted online, and the general public votes for their favorite design. The final 4 applicants are then invited to showcase their designs at 'Flare' for Fashion, where the winner is announced by David Dixon, a top fashion designer in Canada.
All monies raised from this event support the world-renowned University of Toronto Lupus Clinic. This facility provides not only ground-breaking research but also the best possible care and support for lupus patients and their families.
What a really interesting and fun way to raise money and awareness! We certainly wish them all the best for a successful event!
Until next time, Wick
The Lupus Flare Foundation in Ontario, Canada is hosting its 3rd annual fund-raising event, 'Flare' for Fashion. Just what is 'Flare' for Fashion?
'Flare' for Fashion is an innovative and entertaining event that showcases the latest in fashion trends with famed fashion designers and fashion retail houses. The gala attracts celebrities along with Toronto's elite. Most importantly, it puts a face to a debilitating disease by sharing glimpses of heartfelt stories of people who live with lupus.
Simply put ... 'Flare' for Fashion is part contest, part fashion show and part public awareness campaign. Local fashion designers submit applications, which are then narrowed to a field of four contestants, by a judging panel. The final four contestants have photos and videos of their entries posted online, and the general public votes for their favorite design. The final 4 applicants are then invited to showcase their designs at 'Flare' for Fashion, where the winner is announced by David Dixon, a top fashion designer in Canada.
All monies raised from this event support the world-renowned University of Toronto Lupus Clinic. This facility provides not only ground-breaking research but also the best possible care and support for lupus patients and their families.
What a really interesting and fun way to raise money and awareness! We certainly wish them all the best for a successful event!
Until next time, Wick
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