March 2012   

 LupusNEWS                      NTXL

   Official E-Newsletter - Lupus Foundation of America, North Texas Chapter (LFANTX)
Lupus Profile
by Stephanie Leininger
a.k.a. "Maya Flixion"#19,
Assassination City Roller Derby  

"My official lupus diagnosis came last month. Short story: I have lupus (SLE), Ankylosing Spondylitis, Sjogren's Syndrome, and Reiter's Syndrome. Currently, there is no cure for any of them.

Long story: I have apparently had these autoimmune disorders for quite some time, possibly since childhood. 
Yes, I'm scared.  BUT, I am a benevolent idealist. When life gives you lemons, squeeze them until the juice is gone. Surprisingly, in some ways, I find my situation oddly refreshing. For the last few years, and especially the last few months, I was struggling with the thought that I must be a weak person. I was always tired, my head was foggy, I was having a hard time keeping up with things, I was always sore or achy from the smallest amount of activity, and MY LEGS WOULD NOT WORK!
It turns out that, not only am I not a weak person, I am ten times stronger than most people. I may have to deal with lupus, but now lupus has to deal with me. It will not escape without me leaving a mark.  I will not ask to practice any less or work any less often or play any less hard than any other member of my roller derby league, and especially not any member of my team. I expect to be hit just as hard and just as often as everyone else.  One of the problems with lupus and other autoimmune disorders is lack of awareness. For the most part, patients do not look sick. I can assure you that the majority of lupus patients are in excruciating pain most of the time, and that they are exhausted...exhausted in a way that is inexplicable to anyone who does not have lupus.  They are not lazy. They are not dumb. They are not slackers. They are lupus patients."

Click here to read the FULL story:

Maya Flixion's Story

 

Editor's Note:  Maya and her team are donating a portion of the proceeds from all March bouts to their walk team, Assassination City Roller Derby!  The LFANTX will be cheering them on this Saturday, March 10th 6 p.m. at Fair Park Coliseum.  Come join us!

Lupus in the NEWS

Actor, Comedian, Musician Nick Cannon Diagnosed with Lupus Nephritis

 

During an appearance on ABC-TV's Good Morning America, actor, comedian and musician Nick Cannon announced that he has lupus-related kidney disease, called lupus nephritis. 

 

Lupus is a disease that can affect any organ system and kidney involvement is one of the most serious manifestations of the disease.  By publicly discussing a very personal health issue, Nick Cannon is helping to increase awareness of lupus and its health effects on the kidneys.  

 

Lupus nephritis is a serious and sometimes fatal complication of lupus caused by inflammation in the kidneys, making them unable to properly remove waste from the blood or control the amount of fluids in the body.   Abnormal levels of waste can build up in the blood, and edema (swelling) can develop.   Left untreated, nephritis can lead to scarring and permanent damage to the kidneys and possibly end-stage renal disease (ESRD). 

 

To read the entire article click here:

NickCannonhaslupus

 

Editor's Note:  Dr. Gary S. Gilkeson,  Associate Dean for Faculty Affairs and Faculty Development, Medical University of South Carolina, is featured in the above article.  He is a spokesperson for the Lupus Foundation of America, and he also serves as our Keynote Speaker for the Lupus Research Gala on June 2, 2012 (see sidebar on right for gala details).

Get Ready for the Spring  Walk for Lupus Now!
 
Check out these links:
View our videos on YouTube
 
View our photos on flickr
 
Dallas/Ft.Worth Walk for Lupus Now:
Saturday, March 31, 10 a.m.
Click here: Walk Website

 

Killeen Walk for Lupus Now:
Saturday, April 21, 6 p.m.
Click here: Walk Website
 
Weatherford Walk for Lupus Now:
Saturday, May 19, 10 a.m.
Click here: Walk Website
In Memoriam
 
Vicky Tran 
Our thoughts and prayers go out
 to the family of  Vicky Tran.
LUPUS
RESEARCH GALA
Saturday, June 2, 2012

7 p.m. - 11 p.m.

DoubleTree by Hilton Dallas - Near the Galleria

Silent auction, gourmet dinner

and entertainment
 
 
Honoring Dr. David Karp, Chief of the Rheumatic Diseases Division, Department of Internal Medicine, 
University of Texas Southwestern Medical Center.
 
 
 
Keynote Speaker:
Dr. Gary S. Gilkeson,  Associate Dean for Faculty Affairs and Faculty Development, Medical University of South Carolina/Chair, LFA's Medical-Scientific Advisory Council
 
To buy your tickets to the Lupus Research Gala, go to www.lupusgala.kintera.org.  

For more information contact the LFANTX office: 469-374-0590 or toll free at 866-205-2369.

DONATE TO THE LFANTX
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Learn from a Kidney Expert

Lupus and the Kidneys

 

Did you know that an estimated 40% of all people living with lupus will develop kidney complications?  This educational teleconference will address complications, medical evaluation and treatment as it relates to kidney involvement in lupus.

 

Presenter:     Michael Madaio, MD,

                              Georgia Health Sciences University

When:              Friday, March 23rd

                             10:00am-11:00am CST 

 

Please register at www.lupuskidneysteleconference.kintera.org

Please call the LFANTX office at 469-374-0590 or toll-free 866-205-2369 if you have any questions.

Do Current Standards for Determining Lupus Kidney Flares Need Revision?

Experts generally agree that excessive protein in the urine is a common symptom of lupus nephritis, or inflammation of the kidney. However, there is little agreement about how much of an increase in urinary protein indicates a flare. Establishing agreement on what constitutes a flare of lupus kidney disease could help identify the true status of the kidney in people with lupus. The researchers aimed to define normal fluctuations in levels of urinary protein in people with lupus kidney disease who are not experiencing a flare. The researchers found that, according to current standards, patients experiencing the most common types of kidney flares would have delayed treatment for these flares. Conversely, for those with relatively high levels of urinary protein, treatment may be initiated too early. The researchers suggest that current standards for lupus kidney flares may be set too low or too high. The results of this study may one day be used to help better guide treatment strategies for lupus kidney disease.  
 
Read more>>

Heart Disease May Precipitate Depression in Certain People with Lupus  

Depression occurs commonly in people with lupus, as does heart disease. However, it is unknown whether one may trigger or contribute to the development of the other. Increased understanding of factors that may contribute to depression in people with lupus can aid future strategies to prevent and treat depression in people with lupus. The researchers hoped to learn about lupus-related factors that may contribute to the development of depression in people with lupus. The participants were interviewed annually about their health statuses for up to five years. The researchers used statistical methods to determine whether specific lupus-related factors could predict the development of another. The following were found to be predictors of depression in people with lupus regardless of the statistical methods used: being aged 40-59, having less than a full college education, being Hispanic/Latino, and having some form of depression upon entry to the study. Increased education seems to have a protective effect against developing depression in people with lupus. Identifying lupus patients at risk for developing depression could greatly increase their quality of life since there are many effective treatment options for depression.  
 
Read more>>

Validation of a Self-Reported Questionnaire for Neuropsychiatric Lupus Events

The incidence of neuropsychiatric disease in people with lupus varies widely, from 21% to 95%, depending on the stringency of the criteria used. Regardless, it is recognized that the occurrence of neuropsychiatric disease is associated with reduced self-reported quality of life in people with lupus. The use of standardized measures of health-related quality of life associated with neuropsychiatric events in people with lupus has not yet been validated. The investigators sought to examine changes in health-related quality of life associated with clinical outcomes of neuropsychiatric events in people with lupus over the course of one year. Health-related quality of life was determined for each patient by use of the Short Form 36 (SF-36), a questionnaire which includes components about both mental and physical status. The results of the SF-36 self-reports were compared to physician-determined assessments of the patients' neuropsychiatric statuses. The most frequent neuropsychiatric events included the following: headache, mood disorders, cognitive dysfunction, anxiety disorder, cerebrovascular disease, multiple kinds of nerve inflammation, and seizures. Physician-determined changes in the neuropsychiatric statuses of patients were significantly similar to SF-36 self-reports provided by patients. The SF-36 thus appears to be a valid measure of changes in neuropsychiatric status in people with lupus that may complement other kinds of tests. 
 
Read more>>

Lupus: Learn from the Experts is a series of educational webinars on a variety of topics designed to provide you with important information about living with lupus. Don't miss the opportunity to learn from some of the world's leading lupus experts from the comfort and privacy of your home.

This program is provided at no cost to participants.

Due to the great success of the 2011 Learn from the Experts series, it has been expanded in 2012 to include seven topics that were chosen from participant feedback. We are thrilled to be able to provide this valuable free service for people with lupus, their families, caregivers and loved ones in 2012. Sign up today!

Upcoming Programs

 

Pregnancy and Fertility

 With Eliza Chakravarty, M.D., M.S.
Thursday, April 19th at 2:00 PM EST
 
Register for the webinar


Coping and Living with Skin Lupus
 With Victoria Werth, M.D.
Thursday, June 7th at 2:00 PM EST
 
Register for the webinar


Social Security Disability
 With Sheri Abrams, Attorney at Law
Thursday, July 12th at 2:00 PM EST
 
Register for the webinar

 

ct

LFA's Center for Clinical Trials Education and the Lupus Research Registry

YOUR HEALTH. YOUR FUTURE. GET INVOLVED.

Advances in medical research to find new, safer, and more tolerable treatments may improve the future of people living with lupus. Critical to this process are the volunteers who participate in clinical research studies that test the safety and effectiveness of these new treatments. LFA's Center for Clinical Trials Education (CCTE) provides useful information about clinical research to help people decide whether and how to participate. Learn more about lupus clinical research and ongoing studies by visiting the Lupus Foundation of America's Center for Clinical Trials Education (CCTE) at www.lupus.org/clinicaltrials and join the Lupus Research Registry.


iAs part of the LFA's efforts to Bring Down the Barriers to discovery of more effective and tolerable treatments for lupus, the LFA is working through its Center for Clinical Trials Education and Lupus Research Registry to distribute information about clinical research studies currently seeking volunteers. As part of the LFA's mission, we want to inform you of opportunities to learn more about clinical research participation and specific studies seeking participants in your community.

Physicians in your area are currently seeking volunteers to participate in a new clinical research study.  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.comor to LFA's CCTE web site at http://www.lupus.org/clinicaltrials/Illuminate.html.

 

The following physicians are participating in the Illuminate research studies:

 

Dr. John Lavery-Allen, Texas

www.allenarthritisallergy.com

972-747-0709

 

Dr. Iman Ali-Bedford, Texas

817-685-9490/817-685-4380

 

Dr. Thomas Geppert-Dallas/Grapevine, Texas

www.arthdocs.com

214-540-0700

 

Dr. Andreas Reimold-Dallas, Texas

214-648-5674/214-645-2800

 

Dr. Scott Zashin-Dallas, Texas

www.scottzashinmd.com

214-363-2812

 

Dr. Melanie Barron-Fort Worth, Texas

 817-735-2000

 

Dr. Dennis Pangtay-Irving, Texas

972-253-4370

 

Dr. Atul Singhal-Mesquite, Texas

972-288-2600

 

Dr. Eugene Fung-Waco

254-755-4582