Lupus Star Foundation

Shining Bright for Lupus

News

view:  full / summary

Declare World Lupus Day in your State

Posted by Simone on April 13, 2011 at 10:59 PM Comments comments (0)

Let's proclaim May 10th World Lupus Day in all 50 states and all major cities! It is easy all you have to do is contact your governor (http://www.usa.gov/Contact/Governors.shtml) and/or mayor and ask for a proclamation. There is a link to request a proclamation on most of their sites. Fill it our or just email them the below World Lupus Day Proclamation and hopefully they will respond with a certificate of proclamation.

Please join the international Lupus community in urging your local, state and/or federal government to adopt and issue the following World Lupus Day Proclamation:

WHEREAS, lupus is an autoimmune disease that can cause severe damage to the tissue and organs in the body and, in some cases, death; and

WHEREAS, more than five million people worldwide suffer the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with lupus, the great majority of whom are women of childbearing age; and

WHEREAS, medical research efforts into lupus and the discovery of safer, more effective treatments for lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and

WHEREAS, many physicians worldwide are unaware of symptoms and health effects of lupus, causing people with lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and

WHEREAS, there is a deep, unmet need worldwide to educate and support individuals and families affected by lupus; and

WHEREAS, there is an urgent need to increase awareness in communities worldwide of the debilitating impact of lupus; Now, Therefore, Be It Resolved that 10 May 2011 is hereby designated as World Lupus Day on which lupus organizations around the globe call for increases in public and private sector funding for medical research on lupus, targeted education programs for health professionals, patients and the public, and worldwide recognition of lupus as a significant public health issue.

Proclaimed This Day, 10 May 2011

April Awareness

Posted by Simone on April 10, 2011 at 12:34 AM Comments comments (0)

☂ National Donate Life Month

☂ National Autism Awareness Month

☂ National Minority Health Month

☂ Alcohol Awareness Month

☂ World Health Day (7)

☂ World Meningitis Day (24)

☂ National Infant Immunization Week (23-30)

Health Awareness Snippets

Posted by Simone on April 10, 2011 at 12:23 AM Comments comments (0)

March - National Nutrition Month

February - American Heart Month

January - Cervical Health Awareness Month

December - Safe Toys and Gifts Month

See full postings on http://www.icantfitmyjeans.blogspot.com

World Health Day is Today

Posted by Simone on April 7, 2011 at 6:17 PM Comments comments (0)

What is World Health Day?

"World Health Day is celebrated on 7 April to mark the founding of WHO. Each year, the Organization selects a key health issue, and encourages people from all ages and all backgrounds to hold events that highlight the signifi cance of this issue for good health and well-being. World Health Day provides a unique opportunity for communities from across the world to come together for one day to promote actions that can improve our health."

WHD Brochure > http://www.who.int/world-health-day/2011/world-health-day2011-brochure.pdf

World Health Day Website  >  http://www.who.int/world-health-day/2011/en/index.html


News Releases from WHO Website

http://www.who.int/mediacentre/news/releases/2011/whd_20110406/en/index.html

http://www.who.int/mediacentre/news/statements/2011/whd_20110407/en/index.html


First New Treatment for Lupus in More Than 52 Years

Posted by Simone on April 2, 2011 at 7:22 PM Comments comments (0)

(Washington, DC, March 9, 2011) Today, the U.S. Food and Drug Administration (FDA) approved the drug, BENLYSTA®, for the treatment of lupus, an autoimmune disease.


Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA), has issued the following statement regarding the FDA’s decision:


"This is a historic day for the millions of people with lupus and their families around the world who have waited more than 52 years for a treatment breakthrough for lupus. We at the LFA applaud the FDA’s decision to approve BENLYSTA®. BENLYSTA is the first drug ever to be specifically developed to treat lupus, and is a significant first step toward reaching our goal of developing an arsenal of new, safe, effective, and tolerable treatments. Today marks the beginning of a new era of improved diagnosis, prevention, and treatment for the disease.


The LFA wishes to thank the physicians, researchers, industry leaders, and the many study volunteers who made this day possible. We also extend a special thank you to BENLYSTA®’s developers, the staff of Human Genome Sciences and GlaxoSmithKline, who have long been committed to the research and development process. These efforts will go a long way in elevating the profile of this disease that remains a significant national public health problem.


There are a number of pioneering biotechnology and pharmaceutical companies, involved in the research and development of new treatments for lupus, and our hope is that today’s decision will further stimulate additional companies to invest in new therapies for lupus. To build on this momentum and encourage the development of new treatments, the LFA has launched new initiatives that help to strengthen clinical trials. These programs include the launch of a Web-based program designed to train clinical investigators on the instruments used in trials. As well, the LFA recently implemented the LFA Lupus Research Registry which enables individuals to be notified about new clinical trials in their geographic area. The Registry is part of the LFA’s Center for Clinical Trials Education.


The LFA also is partnering with key stakeholders from industry, government, and the scientific community to evaluate data from previous lupus clinical trials with the goal to improve the design of future studies."

November Awareness

Posted by Simone on November 14, 2010 at 4:51 PM Comments comments (0)

❋ American Diabetes Month

❋ COPD Awareness Month

❋ Lung Cancer Awareness Month

❋ National Family Caregivers Month

❋ National Healthy Skin Month

❋ Diabetic Eye Disease Month

❋ National Stomach Cancer Awareness Month

❋ Pancreatic Cancer Awareness Month

❋ Prematurity Awareness Month

❋ Pulmonary Hypertension Awareness Month



October Awareness

Posted by Simone on October 12, 2010 at 1:58 PM Comments comments (0)

This Month is:

❦ National Breast Cancer Awareness Month

❦ National Disability Employment Awareness Month

❦ National Domestic Violence Awareness Month

❦ National Dental Hygiene Awareness Month

❦ National Down Syndrome Awareness Month

❦ National Physical Therapy Month

❦ Talk About Prescriptions Month

❦ Respiratory Care Week (24-30)

❦ National Osteoporosis Day (20)

❦ National Mammography Day (22)

❦ Lung Health Day (27)


Hydroxycholoroquine May Protect Against Skin Involvement in Lupus

Posted by Simone on September 5, 2010 at 12:30 PM Comments comments (1)

What is the topic?

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.

Hydroxychloroquine is a drug that treats malaria, but has been used successfully to treat people with lupus. These anti-malarial drugs may reduce disease flares and organ damage, as well as increase the lifespan for people with lupus. Anti-malarial drugs 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.


What did the researchers hope to learn?

The researchers hoped to learn what factors have an impact on how much time it takes for a lupus patient to develop skin damage.


Who was studied?

580 patients from a study called the “Lupus in Minorities, Nature verses Nurture (LUMIMA)” cohort were evaluated. Most of them were women with an average age of 37 who had lupus for about six years. Thirty-five percent of the patients were African-Americans, 29% were Caucasian, 20% were Texan-Hispanics, and 16% were of Puerto Rican-Hispanic background.


How was the study conducted?

Patients from three different research centers participated in this five-year study. Each patient completed questionnaires and had genetic and laboratory testing performed. There were follow-up visits every six months during the first year of the study and yearly after that. Patients who developed skin rash before or at the time of enrollment in the study were excluded from analyses. The time it took for people to develop skin damage, if any, during the study was looked at. Skin damage was defined as the occurrence of at least one of the following problems for at least six months: thinning hair with scars on the scalp, extensive scarring on the skin, and open sores in the skin. If there was active inflammation in these areas, it was not counted since the idea was to only count damage that remained after the inflammation had been fully treated.

Information about many other features of lupus, including symptoms and blood test results, were also collected from the patients when they entered the study.


What did the researchers find?

39% of patients developed skin damage during the study. These patients included a higher proportion of women than those in the entire study and also included people from all of the different ethnicities represented in the study population. However, African-Americans experienced the highest frequency of skin damage. The frequencies of the different kinds of skin damage were: hair loss with scars (41%), extensive skin scarring (36%), and skin ulcers (13%).

Geography and lifestyle did not seem to have any significant impact on how long it took for lupus patients to develop skin damage. People with discoid lupus developed damage more quickly than people with other kinds of rashes, as did people who had greater overall disease activity, damage to other parts of the body, or small blood clots under the fingernails. People with Raynaud’s (numbness and color changes of fingers or toes that get worse in the cold) took longer to develop skin damage. A number of other comparisons were made with blood test results and other lupus features that did not seem to have any impact on the results.

When many questions are asked of one population of people, sometimes things can look like they are related to each other just due to randomness. This is a statistical problem that has to have mathematical corrections applied to it to improve the chances that the results are valid. In an initial uncorrected analysis, people who were taking any of the following drugs took longer to develop skin damage: hydroxychloroquine, aspirin, anti-inflammatory drugs (like ibuprofen or Aleve), and cholesterol-lowering drugs. After the statistics were adjusted to improve their validity, being Texas-Hispanic or Caucasian, or taking hydroxychloroquine, were now associated with a longer time to develop skin damage.

84% of all of the patients had taken hydroxychloroquine. Among them, those who did not develop skin damage had been taking hydroxychloroquine more frequently than those who did (although the dose was the same). After five years, the risk of developing skin damage from lupus was reduced almost 5-fold in people taking hydroxychloroquine as compared to those who were not.


What were the limitations of the study?

Information about important environmental factors, such as smoking, exposure to sunlight, use of sun blockers, and infections, was not looked at. These things could have affected the results in ways that are currently not clear. Also, even though some statistics were used to improve the validity of the data, all of these analyses were very dependent on something called a “model.” This means that the answer could still change if you ask the question differently or pair together different items in the statistical process.


What do the results mean for you?

Hydroxychloroquine may help to delay the development of skin damage in some people with lupus. Since it is a very safe treatment if a person tolerates it well and continues to get their eyes checked at regular intervals, and since it is thought to have many benefits for people with lupus, this provides an additional reason to continue taking this drug when a person with lupus is feeling better.


Retrieved from Lupus Foundation of America

Study conducted by Authors: Pons-Estel GJ, Alarcón GS, González LA, Zhang J, Vilá LM, Reveille JD, McGwin G Jr; Lumina Study Group. (2010). Arthritis Care & Research 62: 393-400.

September and August Awareness

Posted by Simone on September 1, 2010 at 9:13 PM Comments comments (0)

September is:

❂ Childhood Cancer Month

❂ Fruits and Veggies - More Matters Month

❂ Leukemia and Lymphoma Awareness Month

❂ National Sickle Cell Month

❂ National Infant Mortality Awareness Month

❂ National Cholesterol Education Month

❂ National Yoga Awareness Month

❂ National Ovarian and Prostate Cancer Awareness Month

❂ Reye's Syndrome Awareness Month

❂ National Rehabilitation Awareness Week (19-25)

❂ World Alzheimer's Day (21)

❂ Family Health and Fitness Day USA (25)

❂ National Women's Health and Fitness Day (29)

❂ World Heart Day (30)


August is:

☄ Cataract Awareness Month

☄ Children's Eye Health and Safety Month

☄ National Immunization Awareness Month

☄ Psoriasis Awareness Month

☄ Spinal Muscular Atrophy Awareness Month


LSF Newsletter

Posted by Simone on July 25, 2010 at 8:38 PM Comments comments (0)

We have decided to publish a quarterly newsletter.  There will be information regarding lupus and LSF included in the newsletter.  Topics that are discussed on our site will be highlighted in the newsletter as well.  We would like to include a section for lupus supporters and survivors.  If you have a story or a well wish for someone that you would like to share in the newsletter please contact us.  Also, if you would like a copy of the newsletter please email your mailing address to us.  We would also like to include topics that are of interest to you, so please do not hesitate to tell us what you would like to see in the upcoming newsletter.  Remember its all for you!


Rss_feed

Upcoming Events

Sunday, Oct 15 at 6:00 PM - 7:30 PM
Sunday, Oct 22 at 6:00 PM - 7:30 PM
Sunday, Oct 29 at 6:00 PM - 7:30 PM
Sunday, Nov 5 at 6:00 PM - 7:30 PM
Share on Facebook

Hope & Love 4 Lupus Campaign

Google Translator