Senate Supports National Women’s Health Week
The U.S. Senate recently passed a resolution supporting the goals and ideals of National Women’s Health Week. The event begins annually on Mother’s Day and, this year, concludes on May 17.
The resolution, introduced by Senators Russ Feingold (D-WI) and Olympia Snowe (R-ME) calls on all Americans to take use the celebration as an opportunity to educate themselves on women's health issues, also recognizing the importance of Federally funded programs that provide research into common diseases in women, like lupus. The Families, communities, businesses, government, health organizations and other groups can work together to educate women about steps they can take to improve their physical and mental health and prevent disease, according to the National Women’s Health Information Center, like:
May is Lupus Awareness Month
Here we are, almost through the first half o f the very, merry month of May. And that means we’re also half way through Lupus Awareness Month.
Across the country, lupus support groups are getting the word out about this disease, which effects more than 1.5 million Americans – the vast majority of which are women.
If this is your first time here, I would ask that you start with the Essentials, which I’ll include below, and learn more about this disease, how it might effect you, your friend, or a loved one.
And if you’re curious if you might have lupus, the Lupus Foundation of America has a great short test that might get you thinking .
Then read more here, and discuss what you’ve learned our forum.
Summer's Coming, Watch the Sun!
Rituxan fails as lupus treatment
The drug Rituxan (rituximab), used for treating rheumatoid arthritis and non-Hodgkin's lymphoma, has failed as a treatment for lupus, according to results from a clinical trial. The trial was conducted by two biotechnology companies, Genentech and Biogen.
The drug had also been in a trial as a multiple sclerosis treatment and failed in that as well, although hopes had been higher for a lupus treatment.
The trial involved 257 patients, who received either Rituxan or a placebo. Rituxan did not outperform the placebo on seven effectiveness measures used in the trial.
It has been 30 years since a new lupus drug has been introduced. Two other companies, however, have lupus drug trials underway. Human Genome Sciences is testing a drug that's akin to Rituxan and Bristol-Myers Squibb is testing Orencia (abatacept), a rheumatoid arthritis drug.
Newly Diagnosed: The Forum
If you haven't had an opportunity to visit the About Lupus Forums yet, I encourage you to do so. We hope to make it, slowly, but surely, one of the best places to meet other people with lupus, connect and create new friends, and form an online support group - essential for living day to day with this disease.
The forum is divided into several subgroups, focusing on topics like symptoms, flares, resources and support. If you have an idea for another subgroup, please let me know. You can suggest it in the comments section below.
Nearly $7 Million Earmarked for Lupus Researchers
Researchers from far and wide are earmarked to receive a piece of a $7 million funding pie, courtesy of The Alliance for Lupus Research (ALR). The ALR recently announced its awards.
Twenty-seven projected will be funded through ALR’s Target Identification in Lupus (TIL) and Pilot Grant programs. With this year’s funding awards announced, the ALR has officially funded more than 100 research projects, and committed more than $50 million to research, since its founding in 1999. A full list of grantees is available on the organization’s website.
TIL investigators receive a two-year, up-to-$500,000 award for research focused on removing the barriers to new treatments and a possible cure. All research funded under the TIL program is based on realizable goals for translation into therapeutic discovery programs – in other words, research that the ALR says “can move quickly from the laboratory to the patient’s bedside.”
Pilot Grant investigators receive a one-year award of up to $75,000. The Pilot Grant program is designed to support efforts that reflect innovative approaches and techniques and aid in the development of necessary pilot data for submission of larger awards to National Institutes of Health, the ALR, or other funding agencies.
Frequently Asked Questions
If you’ve been newly diagnosed with lupus, or have lived with it for some time, you may have dozens of questions related to the disease. In an effort to collect as many of those questions as we can, provide some short answers, and then link to more in-depth information, we have launched this Frequently Asked Questions page. Here you will discover questions that have been asked, with a link to provided answers.
If you have questions that are not covered in this document, please e-mail me at lupus.guide@about.com. We hope to add to this page regularly, and welcome any and all questions you might have.
Newly Diagnosed: Signs and Symptoms
Each week, About Lupus takes a moment to step back and welcome the women and men who have been newly diagnosed with lupus, or know someone who has been recently diagnosed.
This week, we’re asking the question, what are the signs and symptoms of lupus? And what are some conditions related to the disease?
Lupus carries with it a number of smaller signs and symptoms that are often overlooked or misinterpreted as originating from a different disease, leading to misdiagnosis. But when a more common symptom is accompanied by a more suggestive sign or complication, lupus becomes a more obvious diagnosis to investigate.
These symptoms are often what patients notice themselves; there are other symptoms a doctor may discover upon closer examination and blood tests. The most common symptoms include:
- Achy joints with swelling
- Extreme fatigue
- Unexplained rashes
- Unexplained rashes that turn to sores, then scar
- Butterfly (malar) rash across nose and cheeks
- Anemia
- Pleurisy (pain in the chest when deep breathing)
- Ulcers inside the mouth and nose
- Photosensitivity
- Cardiopulmonary disorders (heart/lung)
More:
FDA Probing Brain Disease Risk Linked to CellCept
The Food and Drug Administration’s Center for Drug Evaluation and Research is investigating whether patients using certain organ transplant drugs, including CellCept (mycophenolate mofetil), a drug sometimes taken by lupus patients, are succumbing to an often-fatal neurological disease.
The pharmaceutical company responsible for CellCept, Roche, alerted the Food and Drug Administration (FDA) in November about the complication, reports the Associated Press (AP). The other drug the FDA is investigating: Myfortic (mycophenolate acid), made by Novartis.
Progressive multifocal leukoencephalopathy (PML), the neurological disease in question, attacks the brain and central nervous system. Doctors and patients using either drug are encouraged to keep an eye out for symptoms, which include vision problems, loss of coordination and memory loss.
Roche reports 10 cases of PMM since the drug was first released in 1995, the AP reports. More than 500,000 patients have used the drug.
The FDA will review new labeling for the drug, a process it expects to take two months.
Oklahoma Doctor May Have Made Lupus Connection
The work of an Oklahoma research physician may have uncovered one of the key mysteries of systemic lupus erythematosus: Why it affects far more women more than men – nine times more often.
Dr. Amr Sawalha, of the Oklahoma Medical Research Foundation, has discovered a gene on the X chromosome that likely plays a role in lupus, reports the Oklahoman news daily. Women have two X chromosomes, men only have one.
Dr. Sawalha discovered that this gene, believed to be the first related to adult onset lupus on an X chromosome, may predispose people to the disease. If the gene operates incorrectly, immune system T cells become overactive, resulting in the autoimmune disease.
It is hoped that the gene’s discovery leads to new therapies for lupus.
More Lupus Research News: