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 Legislative Action Center 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!


Help Us Solve the Cruel Mystery™ National Tour

A new survey conducted by the Lupus Foundation of America found that those at greatest risk for the disease have never heard of lupus or know little or nothing about lupus beyond the name. Understanding this fuels great urgency for increased understanding and awareness of lupus.

We wanted to learn how we could make our voice heard louder to increase public awareness and understanding of the disease. To do this, we conducted extensive research among people with lupus, their families, physicians, scientists, and other stakeholders. We asked them how we should talk about lupus. Their words came through loud and clear. The answer: Identify lupus for what it is -- a disease that is agonizingly puzzling, physically challenging, complex, and hard to define. In short, it is the cruel mystery.

With these clear words, a new look, and new national initiatives, we are stepping-up our efforts as a result of these findings. Help Us Solve the Cruel Mystery™ is the Lupus Foundation of America’s new rallying cry to achieve our goals.

To support our efforts, we launched the Help Us Solve the Cruel Mystery™ National Tour, a multi-city education and awareness initiative designed to engage the public, healthcare providers, Members of Congress, and those with the disease to join the fight to end lupus. You can learn more about this exciting program and how you can join the fight by visiting the campaign website at cruelmystery.org.

As you know, our mission is to improve the quality of life for all people affected by lupus through a comprehensive program of research, education, and advocacy. This mission is not changing. Together we will lead the fight to find the causes and cure for lupus. To learn more, visit our web site lupus.org.

Help Us Solve the Cruel Mystery ™!


Patients' Access to Treatments Act is Reintroduced

The Patients Access to Treatments Act of 2013 (H.R. 460) was reintroduced by Representatives David B. McKinley (R-WV) and Lois Capps (D-CA) on February 4.  The legislation would make innovative and necessary medications more accessible to patients by reducing excessive out-of-pocket expenses that are a result of a drug being placed on a specialty tier. 

E-mail your Representative and urge them to co-sponsor the Patients Access to Treatments Act.

With a number of new and innovative treatments for lupus in the drug pipeline, these highly anticipated treatments will mean nothing if people with lupus cannot afford them.  Some health insurance companies are now placing biologic and specialty drugs on to a "specialty tier" that require patients to pay a co-insurance rather than a flat, dollar co-pay.  Co-insurance rates can range from 25 to 50 percent the cost of a drug, amounting to hundreds or even thousands of dollars in out-of-pocket costs each month for a single medication.

Specialty tiers are fundamentally unfair and discriminatory. H.R. 460 will address this problem by limiting cost-sharing obligations on specialty tier drugs. Reducing the cost-sharing burden will help those who rely on these drugs avoid becoming more seriously ill or disabled.

Sign the Research Petition to Congress The Lupus Foundation of America is spearheading a campaign asking lupus activists across the country to sign a petition to Congress asking for their support in funding lupus research.  The petition will be delivered to Members of Congress on Capitol Hill during the National Lupus Advocacy Summit on June 25, 2013.

Together, we can help solve this cruel mystery. Sign our petition today! Thank you.

Encourage your Representative to Join the Congressional Lupus Caucus

With the 113th Congress well under way, we need your help to increase membership in the Congressional Lupus Caucus. E-mail your Representatative today and ask them to join the Caucus. The Caucus is a forum for Members of Congress and their staff to learn more about lupus and spread awareness of the disease on Capitol Hill.


LFA Seeking volunteers to participate in new clinical research study

As part of the Lupus Foundation of America's efforts to bring down the barriers of discovering more effective and tolerable treatments for lupus, the Foundation is working through its Center for Clinical Trials Education (CCTE) and Lupus Research Registry to distribute information about clinical research studies currently seeking volunteers. As part of our 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 evaluated for individuals with systemic lupus erythematosus. To find out more information, including the eligibility requirements for volunteer participants, go to the study website www.illuminatestudies.com/ or the Foundation’s CTTE website at www.lupus.org/clinicaltrials/Illuminate.html.

You can join the Foundation's Lupus Research Registry to be alerted to additional research opportunities.


Compact Fluorescent Light Bulbs and Lupus Patients

Very Important - Read about light bulbs and your health.


UV Exposure: What You Need to Know

Very Important - Read about UV Exposure.


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

"Walk for Lupus Now"™

Join the Lupus Foundation of America and Walk for Lupus Now™ to bring us one step closer to finding a cure! Walk to make a difference in the lives of people affected by lupus and raise urgently needed funds for research, education, and support services.

For more information please visit www.lupus.org/walk.


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Lupus Clinical Trials (Lupus patients needed for research studiesFhow )

Lupus and Research

Lupus Publications

Lupus-Related Sites

Medical Sites

National Library of Medicine Interactive Tutorial on Lupus (Excellent tutorial)


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
Complementary and Alternative Treatments for Lupus
Diagnosis of Lupus
Dietary Guidelines For The Patient With Systemic Lupus Erythematosus
Drugs, Supplements, and Herbal Information (Important information)
Emotional Wellness Through Imagery for the Lupus Patient
Exercise and Lupus (Movement does help your symptoms)
Holistic Health and Well-Being of Lupus Patient
How To Determine If A Health Site Is Reliable (Important reminder)
How to Prepare for a Doctor's Appointment (Important reminder)
Job Accommodations for Employees with Lupus
Laboratory Tests Used In The Diagnosis Of Lupus
Living Well with Lupus
Lupus Books Recommended By Cyndee
Lupus Chapters and Support Groups for Lupus Patients
Lupus Doctor Information
Lupus Information for Men
Lupus and Pregnancy
Lupus Publications, Videos, Merchandise, Posters, Music, etc. (Please help us promote lupus awareness.)
Managing Your Fatigue
Medication Assistance Programs for Lupus Patients
Positive Thoughts
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 (Important to be proactive in 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

Disclaimer
Page Last Updated: Friday, August 1, 2014


Awarded October 27, 1999


Awarded November 17, 2007

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Copyright © 1997-2014 Cyndee Miller