Cyndee's Lupus Home Page - Living With Lupus Over 40 Years

Welcome to Cyndee Miller's Lupus Home Page

Dedicated to Lupus Awareness


SOMEONE YOU KNOW HAS LUPUS

DID YOU KNOW
MORE PEOPLE HAVE LUPUS
THAN AIDS, SICKLE-CELL ANEMIA, CEREBRAL PALSY, MULTIPLE SCLEROSIS, AND CYSTIC FIBROSIS
COMBINED!

Source: Lupus Foundation of America, Inc., Lupus Fact Sheet
Provided by the Lupus Foundation of America, Inc.

Lupus is a chronic, autoimmune disease which causes inflammation of various parts of the body, especially the skin, joints, blood, and kidneys. The immune system normally protects the body against viruses, bacteria and other foreign materials. In an autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against "self."

Lupus is NOT infectious, rare or cancerous.

The Lupus Foundation of America market research data show that between 1.4 million and 2 million people have been diagnosed with lupus. (Study conducted by Bruskin/Goldring Research, 1994.)

Although the cause of lupus is unknown, scientists suspect that individuals are genetically predisposed to lupus, and know that environmental factors such as infections, antibiotics, ultraviolet light, extreme stress and certain drugs play a critical role in triggering lupus.

Lupus affects 1 out of every 185 Americans. Although lupus can occur at any age, and in either sex, 90% of people with lupus are women and during the child bearing years lupus strikes women 10-15 times more frequently than men. Lupus is more prevalent in African Americans, Latinos, Native Americans and Asians.

Only 10% of people with lupus will have a close relative (parent or sibling) who already has or may develop lupus. Only about 5% of the children born to individuals with lupus will develop the illness.

Lupus can be difficult to diagnose as the symptoms come and go and mimic many other illnesses. Some symptoms of lupus can be transient joint and muscle pain, fatigue, a rash caused by or made worse by sunlight, low grade fevers, hair loss, pleurisy, appetite loss, sores in the nose or mouth or painful sensitivity of the fingers to the cold.

Sunlight, infection, injury, surgery, stress or exhaustion can trigger "flare-ups" of lupus (a more active state of the disease).

Although lupus ranges from mild to life-threatening and thousands of Americans die with lupus each year, the majority of cases can be controlled with proper treatment.

Increased professional awareness and improved diagnostic techniques and evaluation methods are contributing to the early diagnosis and treatment of lupus. With current methods of therapy, 80-90% of people with lupus can look forward to a normal lifespan.

While medical science has not yet developed a method of curing lupus, new research brings unexpected findings and increased hope each year.

The Lupus Foundation of America has nearly 100 local chapters directly providing patient services, education, awareness and research in their local areas.

The disease comes in three forms: discoid lupus, which is limited to the skin and often identified by a rash on the face, neck or scalp; systemic lupus, which can affect almost any organ or system of the body; and drug-induced lupus, which presents itself after the use of certain prescribed drugs.


May is Lupus Awareness Month

It doesn't have to be May to help spread the word about lupus.
If you want to know more about lupus, contact
The Lupus Foundation of America, Inc.


Lupus Advocacy - Attention - your help is needed - now!

The Lupus Foundation of America, Inc. is the lupus community's advocate on Capitol Hill. Please refer to the LFA Government Advocacy site to be informed on the current issues being addressed in Congress.

Please write to your two United States Senators and to your U.S. Representative and urge them to support the issues.

Thank you for your assistance and support of LFA advocacy efforts.
Every email does count!


Lupus Legislative Alert

On Thursday, August 6, 2009 Sen. John D. Rockefeller IV (D-WV) introduced S.1630, “The Affordable Access to Prescription Medications Act of 2009.” The Lupus Foundation of America applauds and supports Senator Rockefeller for creating this important legislation which will provide Americans with chronic diseases vastly improved access to life-saving medications.

“The Affordable Access to Prescription Medications Act of 2009” will protect people with lupus and other chronic diseases from high out-of-pocket expenses for their prescription drugs.

There are several potential new treatments in the near-term pipeline that may provide a better quality of life for people with lupus. But these anticipated new treatments will mean nothing if people with lupus are not able to access them because they are cost-prohibitive. For example, some people with multiple sclerosis, another autoimmune disorder may pay out-of-pocket in excess of $800 a month for access to new medications.

For people with serious or life-threatening conditions such as lupus, S. 1630 will provide greater access and affordability for necessary prescription treatments. We encourage you to join us in supporting this vital legislation by visiting our legislative action center and urging your Senators to cosponsor S. 1630.

Thank you!


Congress Reaffirms Support and Continues Funding For Lupus Research, Education and Patient Registry

Congress has again provided funding for critically important lupus research and education programs advocated by the Lupus Foundation of America. President Bush recently signed the Consolidated Security, Disaster Assistance, and Continuing Appropriations Act of 2009 (H.R. 2638). This legislation continues funding for important lupus programs, including basic, clinical and epidemiological research, and public education and awareness initiatives. Read more


First Potential Lupus-Specific Treatment in Sight

BENLYSTATM Successful in first of two pivotal clinical trials.
On July 20, 2009, Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) announced positive results
from a year-long clinical trial of BENLYSTA for treating lupus.
Read more about trials.
(Site may be temporarily unavailable. Try again later.)

Listen to LFA President & CEO Sandra C. Raymond Comments on First Potential Lupus Treatment in 50 Years


Registration for LFA's 2010 Advocacy Day on Capitol Hill Now Open

Want to help generate more funds for lupus research and awareness?
Join lupus advocates in Washington, DC, Monday and Tuesday, March 15-16, 2010,
as we introduce the Lupus Foundation of America's advocacy priorities for FY2011 to Members of Congress.
Register for the LFA's 2010 Advocacy Day


Compact Fluorescent Light Bulbs and Lupus Patients

Very Important - Read about light bulbs and your health.


Show Your Support for Lupus

Wear the Official National Wrist Band. You can purchase one from The Lupus Foundation of America Store.


Upcoming Live Chats About Lupus

The Lupus Foundation of America, Inc. presents live moderated chats featuring the nation's leading experts in lupus. You can to ask a question and learn more about lupus from leaders in a number of medical disciplines associated with lupus.


Lupus Awareness Campaign

Walks now underway - April 2010

Walk for Lupus Now™ is the Official Lupus Walk-a-thon to raise funds for lupus research and education programs. Events are held throughout the United States. Contact the nearest LFA chapter to learn when the next walk-a-thon will be held in your region.


* * * Please bookmark my site so you can return for new lupus information. * * *

Genetics of Systemic Lupus Erythematosus Family Study

Lupus Clinical Trials

Lupus Fact Sheets in Other Languages

Lupus News and Research

Lupus Publications (including Talking Books for Blind and Visually Handicapped under "Other")

Lupus Sites in Spanish

Lupus patients needed for research studies

Lupus-Related Internet Sites

Medical Internet Sites

National Library of Medicine Interactive Tutorial on Lupus

Novel and Experiemental Therapies for Lupus

Study Seeks Lupus Patients of Asian Descent (attention families of Chinese, Japanese, Hawaiian, Pacific Islander, Filipino, East Indian and Vietnamese descent)


Helpful Information for the Lupus Patient

Ask the Lupus Experts (Submit a question to the LFA panel of nationally-renowned lupus medical experts.)
Biofeedback: A Tool For Living With Lupus
Commonly Asked Questions About Lupus
Diagnosis of Lupus
DHEA and Lupus
Dietary Guidelines For The Patient With Systemic Lupus Erythematosus
Drug - Herb Interactions
Emotional Wellness Through Imagery for the Lupus Patient
Heart Disease Among Women with Lupus
Holistic Health and Well-Being of Lupus Patient
How Lupus Affects the Body
How To Determine If A Health Site Is Reliable (Important reminder)
How to Prepare for a Doctor's Appointment (Important reminder)
Important Information for People With Lupus
Job Accommodations for Employees with Lupus
Laboratory Tests Used In The Diagnosis Of Lupus
Living with Lupus
Lupus Books Recommended By Cyndee
Lupus Chapters and Support Groups for Lupus Patients
Lupus Doctor Information
Lupus Information for Men
Lupus, Pregnancy and Hormones
Lupus Publications, Videos, Merchandise, Posters, Music, etc. (Please help us promote lupus awareness.)
Managing Your Fatigue
Medication Assistance Programs for Lupus Patients
Positive Thoughts
Revolution Health (Helps families take action to manage their health care and achieve their healthy living goals.)
Signs and Symptoms Which May Signal That A Lupus Flare Is Beginning
Stroke is a Brain Attack
Tai Chi and Health with Lupus Patient Testimonial
Tips for New Lupus Patients
Ways to Manage Your Health Care
Ways to Relax and Reduce Stress
Words of Inspiration


Helpful Information for Lupus Caregivers


About Cyndee Miller - Living with lupus over 40 years

Impact of Cyndee's Lupus On Her Family

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Page Last Updated: Wednesday, January 27, 2010


Awarded October 27, 1999


Awarded November 17, 2007

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