End of Summer 2010
In This Issue
Bridge Tournament for Lupus
Living Well With Lupus Symposium
Lupus Loop
Lupus Research Updates

Lupus in the Family
Living Well With Lupus Chat
September 9, 2010
Register online

Pain Management

Lupus Educational Teleconference Series
September 11, 2010
12:00pm - 1:00pm
Please register

Systemic Lupus Erythematosus Self Help Course
September 22 -
October 20, 2010
Penn's Place
New Castle, DE
Reserve your spot online

8th Annual Bridge Tournament for Lupus
September 27, 2010
Bala Golf Club
2200 Belmont Avenue Philadelphia, PA
RSVP Online

Living Well With Lupus
Annual Symposium
October 2, 2010
9:00am - 3:30pm
Springfield Township High School
Erdenheim, PA 19038
Register Online

Vivir con Lupus
Lupus Educational Teleconference Series
12 de octubre de 2010
7:00pm - 8:00pm
Please register

Living with Lupus
Lupus Educational Teleconference Series
October 13, 2010
7:00pm - 8:00pm
Please register

Lupus Loop
5k Run and 2 Mile Walk for Lupus Now
October 31, 2010
Check-in at 7:45am
Run/ Walk begins 9:15am
Register or Donate Online

Lupus and the Brain
Lupus Educational Teleconference Series
November 13, 2010
11:00am - 12:00pm
Please register

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We hope that this email finds you and your family Living Well! We are sending you this quick email to keep you in the Loop about upcoming programs and events.

As you can tell, this is just a short E-Newsletter. You can expect to receive your September E-Newsletter in your inbox shortly after Labor Day. In order to Bridge the gap between the August E-Newsletter and the September E-Newsletter we are sending this quick update.

Annette Myarick
Lupus Foundation of America, Philadelphia Tri-State Chapter

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Living Well with Lupus

Joan T. Merrill, M.D.
Joan T. Merrill, M.D.

Medical Director from the national
Lupus Foundation of America joins us for the
Living Well With Lupus
Annual Symposium
Saturday, October 2, 2010
Springfield Township High School
1801 East Paper Mill Road
Erdenheim, PA 19038
Registration and Continental Breakfast: 9:00am
Symposium: 9:45 - 3:30pm
Register online

Keynote Presentation
Lupus in the Lab: Lupus Expert Weighs in on the Future of Lupus Research
Speaker: Joan T. Merrill, M.D. the Medical Director of the national Lupus Foundation of America

The symposium will also feature a variety of workshops such as I Have Lupus Now What?, Cool Moves: Exercise Options for Better Health, and Taking Good Care, a workshop for friends and family only. Visit our website at www.lupustristate.org to find more information and register online.

Our Telephonic Support Group is now the Living Well With Lupus Chat! To kickoff the new format of this monthly call, we are hosting a "Lupus in the Family" discussion. To join, simply register on our website www.lupustristate.org.

Lupus in the Family
Living Well With Lupus Chat
Thursday, September 9, 2010
Why I Walk in the Lupus Loop
5K Run and 2 Mile Walk for Lupus Now
Cheri (center) with members of team Cheri's Family & Friend
19th Annual Lupus Loop
My name is Cheri and I was diagnosed with lupus in June 1994, I'll never forget that day because it is the day that I thought my life had ended.

I had been feeling sick for quite some time. Most of the doctors that I went to told me that I was tired and working too hard. I am a wife, I had two young children, and was working outside of my home. Yes, I was tired but this was far beyond tired. I could hardly lift my head off of my pillow most mornings.

I searched for answers because I knew something was wrong and I needed someone to help me find the answer. I finally found my way to a rheumatologist who ran a lot of tests because he wanted an answer as much as I did. After the test results came back, I finally had an answer: lupus. When he told me the diagnosis, I was scared. I had never heard of lupus and I was sure that it meant I was going to die.

I did my research, learned more about lupus and found out that it's not a death sentence. Far too many people don't understand lupus. I walk in the Lupus Loop because I want people to know about lupus. I don't want people to be afraid. We share a common bond in this disease even though it affects each person differently.

I walk in the Lupus Loop 5k Run and 2 Mile Walk for Lupus Now for all of the support that I've received over the years. I walk so that others will be encouraged. Most of all I walk for ME, because right now, I am living well with lupus!

Join Cheri and the Philadelphia Tri-State lupus community at the 19th Annual Lupus Loop 5K Run and 2 Mile Walk for Lupus Now on Sunday, October 31, 2010. For more information or to register, visit us online at www.lupusloop.org or contact Cate at the chapter office at 215-517-5070 or toll-free (DE, NJ and PA only) at 866-517-5070, email: crooney@lupustristate.org.
Lupus Research Updates

A Self-Assessed Lupus Organ Damage Instrument
When a person has a flare of lupus disease activity, the main goal of most treatments is to bring the inflammation under control. However, after the flare dies down, there may be some damage left, which is important to know about. By predicting the kind of damage that some people are more prone to, steps might be taken to prevent this damage. The researchers hoped to learn whether a lupus damage questionnaire, filled out by lupus patients instead of their doctors, would be accurate and/or useful.

Hydroxycholoroquine May Protect Against Skin Involvement in Lupus
Many people with lupus develop skin rash early on in the course of their illness. This is especially true in people from minority populations, such as African-Americans and Hispanics. Anti-malarial drugs such as hydroxycholoroquine are not just used for skin involvement, but are widely prescribed for lupus patients due to their ability to reduce inflammation and delay the absorption of damaging ultraviolet light by the skin. In this study, researchers hoped to learn what factors have an impact on how much time it takes for a lupus patient to develop skin damage.

Anti-malarial Drugs Decrease Risk of Blood Clots in People with Lupus
Many study reports have suggested that people with lupus have an increased risk for blood clots, but the degree of this increased risk has varied widely across studies. In addition, previous studies have found that anti-malarial drugs such as hydroxychloroquine (Plaquenil) may decrease the risk for blood clots, but the patients in these studies might have had different amounts of these treatments, or had differing severity of lupus for differing amounts of time. This could have led to confusion about whether it was the Plaquenil protecting these patients or some other factors. In this study, the researchers hoped to determine the risk of developing blood clots in people with lupus, while factoring in the year of diagnosis and disease severity.

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