RSS Comments RSS

Archive for the ‘Lupus Awareness Information’ Category

« Older Entries

Lupus Alliance of America

Friday, March 26th, 2010

The Lupus Alliance of America is working to build a brighter future for all lupus patients and their families.

from their “about us” page:
The Lupus Alliance of America is a group of agencies that have come together for the express purpose of providing needed services to those affected by lupus within their local communities. Our mission is “To ensure the delivery of services to those affected by lupus through affiliate members and other agencies and to fund research efforts.”

The Lupus Alliance of America serves to support those individuals, organizations and agencies that are involved in research to find a cure for lupus or to improve treatment of the disease. This support includes providing money for such research and the dissemination of information that will help to advance those efforts.

The Lupus Alliance of America:

  • Promotes programs of public awareness and education about lupus.
  • Promotes, through affiliates of the corporation, patient education programs and services for those affected by lupus.
  • Works with health professionals to improve the standards of diagnosis, care, services and treatment of those suffering from lupus.
  • Serves as an advocate for those affected by lupus.
  • Supports research into the causes, treatment and cure of lupus.

from their affiliates list page:
The Lupus Alliance of America and the Affiliates listed below are working to build a brighter future for all lupus patients and their families.
Lupus Alliance of America

3871 Harlem Rd.
Buffalo, NY 14215
Phone: 1 (866) 415-8787
Fax: 1 (716) 835-7251
E-mail: info@lupusalliance.org
Web: http://www.lupusalliance.org
Lupus Alliance of America Affiliates:

Hudson Valley Affiliate
100 South Bedford Road
Suite 340
Mt. Kisco, NY 10549
Click here for map

Phone: 1 (800) 850-9000
Fax: 1 (516) 826-2058
Info: lupusalliancehv@aol.com
Web: http://www.lupushudsonvalley.org

Long Island/Queens Affiliate
2255 Centre Ave
Bellmore, NY 11710
Click here for map

Phone: 1 (800) 850-9000
Fax: 1 (516) 826-2058
General E-Mail: info@lupusliqueens.org
Walk-Along for Lupus: lupuswalkny@aol.com
Web: http://www.lupusliqueens.org

Michigan Indiana Affiliate
26507 Harper Avenue
St. Clair Shores, MI 48081
Click here for map

Phone: 1 (800) 705-6677
Fax: 1 (586) 775-8494
Customer Service: info@milupus.org
Other Information:
Web: http://www.milupus.org

New York Southern Tier Affiliate
1115 Front Street
Binghamton, NY 13905
Click here for map

Phone: 1 (800) 33-LUPUS
Fax: 1 (607) 772-6567
Info: lupusnyst@stny.rr.com
Web: http://southerntier.lupusalliance.org

Upstate New York Affiliate
3871 Harlem Rd
Cheektowaga, NY 14215
Click here for map

Phone: 1 (800) 300-4198
Fax: 1 (716) 835-7251
General E-mail: info@lupusupstateny.org
Web: http://www.lupusupstateny.org

Tags: , , , , , , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | No Comments »

Psychotherapy May Help People With Lupus

Thursday, March 11th, 2010

Psychotherapy May Help People With Lupus Cope with Stress

Lupus CognativePsychotherapy helps cut the incidence of psychological woes in patients with lupus who have high levels of daily stress, a new study finds. The treatment also helps these patients improve and maintain their quality of life, according to a new Spanish study. The research included 45 patients randomly assigned to a control group or to a therapy group. Each received 10 weekly sessions of cognitive behavioral therapy (CBT). By the end of the study, the patients in the therapy group had significantly reduced levels of depression, anxiety and daily stress — along with significant improvement in quality of life — compared to those in the control group.

However, the patients in the therapy group didn’t show any significant reduction in lupus disease activity, said the Spanish researchers. The study was led by N. Navarrete-Navarrete of the University Hospital Virgen de Las Nieves, and was recently published in the journal Psychotherapy and Psychosomatics.  (source ethiopianreview.com)

This is an actual abstract of the study

Efficacy of cognitive behavioural therapy for the treatment of chronic stress in patients with lupus erythematosus: a randomized controlled trial.

Chronic stress worsens the quality of life (QOL) of lupus patients by affecting their physical and psychological status. The effectiveness of a cognitive-behavioural intervention in a group of patients with lupus and high levels of daily stress was investigated. METHODS: Forty-five patients with lupus and high levels of daily stress were randomly assigned to a control group (CG) or a therapy group (TG); they received cognitive behavioural therapy (CBT) which consisted of ten consecutive weekly sessions. The following variables were evaluated at baseline and at 3, 9 and 15 months: (1) stress, anxiety, depression, (2) Systemic Lupus Erythematosus Disease Activity Index, somatic symptoms, number of flares, (3) anti-nDNA antibodies, complement fractions C3 and C4 and (4) QOL. A multivariate analysis of repeated measures and various analyses of variance were carried out. RESULTS: We found a significant reduction in the level of depression, anxiety and daily stress in the TG compared to the CG and a significant improvement in QOL and somatic symptoms in the TG throughout the entire follow-up period. We did not find any significant changes in the immunological parameters. CONCLUSIONS: CBT is effective in dealing with patients suffering from lupus and high levels of daily stress as it significantly reduces the incidence of psychological disorders associated with lupus and improves and maintains patients’ QOL, despite there being no significant reduction in the disease activity index. (source nih.gov)

Tags: , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | 1 Comment »

Lupus Foundation of America Collaborates with Feds to Expand Medical Education

Monday, February 15th, 2010

Lupus Foundation of America Collaborates with Federal Agencies and the U.S. Surgeon General’s Office to Expand Medical Education on Lupus

systemic-lupus-image(Washington,DC) Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities. The meeting, held at the American College of Rheumatology offices in Atlanta, Georgia from January 12–14, 2010, was facilitated by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), and Office of Minority Health (OMH).

According to an LFA survey, a person waits on average three years and visits four doctors before receiving an accurate diagnosis of lupus. More than 90 percent of people with lupus are women, and it is two to three times more common among African Americans, Hispanics, Asian Americans, and Native Americans. Physician and health care provider education is critical to improving the early diagnosis and management of lupus, and ultimately preventing the life-threatening consequences of the disease, particularly among those most at-risk for the disease.

An estimated $1.6 million is available for the initiative entitled, “Eliminating Disparities in Lupus Through Education and Training for Health Professionals” (EDLET/HP), which ultimately seeks to expand and promote the utilization of more comprehensive lupus curricula in medical and nursing schools, and among health care professionals and professional associations.

It is estimated that 80 percent of Americans know little or nothing about lupus. For far too long there have been limited resources to address the patient, public, and professional education gaps in lupus. In part, the first-ever Ad Council public awareness campaign on lupus sponsored by the OWH launched last year began to address the long-standing need to raise awareness and close the gap. The LFA is the Founding Partner on the campaign, “Could I Have Lupus?” which is directed at those most at-risk for developing the disease, and urges individuals who may be experiencing symptoms to ask their doctor about lupus. The EDLET/HP initiative is the health care professional counterpart to the Ad Council campaign.

“The LFA commends the Office of Minority Health and Office on Women’s Health for the foresight in developing these initiatives,” said Sandra C. Raymond, LFA President and CEO. “We also want to thank lupus advocates across the United States for bringing to Congressional attention the urgent need for comprehensive patient, public, and professional education programs on lupus.”

This year, the LFA will be hosting its 12th annual Advocacy Day program in Washington, DC from March 15-16, 2010. It is an opportunity for individuals to educate Members of Congress about lupus, and encourage them to support more funding for lupus research and education programs. To learn more Advocacy Day or to register, visit www.lupus.org/advocacyday.

Tags: , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | 2 Comments »

Improved Mortality Outcomes for Children with Rheumatic Diseases

Thursday, January 28th, 2010

A recent study by researchers from the Cleveland Clinic found that the overall mortality rate in the U.S. for all pediatric patients with rheumatic diseases was not worse than the age and sex-adjusted population. Furthermore, mortality rates were significantly lower than reported in previous studies of rheumatic diseases and conditions that are associated with increased mortality. Details of the study appear in the February issue of Arthritis & Rheumatism, a journal published by Wiley-Blackwell on behalf of the American College of Rheumatology.

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) estimates that 300,000 children in the U.S. suffer from some form of arthritis or rheumatic disease. According to CARRA, childhood arthritis is the #1 cause of acquired disability in children and is the 6th most common chronic childhood disease.

While rheumatic diseases present well-known risks to health, function, and quality of life, several conditions—juvenile rheumatoid arthritis, childhood systemic lupus erythematosus, dermatomyositis, various vasculitides, and systemic sclerosis are associated in various studies with a small but significant increase in mortality.

The Cleveland Clinic study team, however, maintains that previous mortality studies were relatively small, reported mortality outcomes only on specific diseases, had a follow up time of less than 10 years, and were mostly conducted prior to the 1990s, when new and improved drug treatments emerged. The team suggests that larger studies may also be flawed because most were based on physician surveys, without strategies to verify response.

To determine the mortality rates, risks, and causes of death associated with pediatric rheumatic diseases in the U.S., the researchers examined the world’s largest rheumatology registry, the Pediatric Rheumatology Disease Registry (PRDR), which includes 49,023 patients from 62 centers who were newly diagnosed between 1992 and 2001. Identifiers were matched with the Social Security Death Index censored for March 2005. Death certificates, referring physicians, and medical records confirmed deaths. Causes of death were derived by chart review or from the death certificate.

After excluding patients with malignancy, 110 deaths were identified among 48,885 patients in the PRDR registry. This number was significantly lower than the expected mortality from the age- and sex-adjusted U.S. population especially among 18,111 patients who were followed up for at least 9 years. The standardized mortality ratio was notably greater for systemic lupus erythematosus and dermatomyositis but not for systemic juvenile rheumatoid arthritis and was markedly less for pain syndromes. Most of the deceased with inflammatory disease died of their disease or disease complications, while many of the deceased with pain syndromes died of non-natural causes.

“One possible cause of the increased survival in the present study compared with previous studies may be the improved treatment that was introduced in the 1990s, said the lead author of the study Philip Hashkes, M.D., M.Sc. “Since the information in the PRDR was limited, we could not explore in depth for risk factors or early predictors of mortality. This and continued follow-up of this cohort for mortality trends should be investigated in future studies.”   (Source: Cleveland Clinic)

Tags: , , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | No Comments »

Drug-Induced Lupus is Reversible

Sunday, November 15th, 2009

lupus symptomsThe drugs most frequently associated with drug-induced lupus are:

Chlorpromazine, Hydralazine, Isoniazid, Methyldopa, Penicillamine, Procainamide, Quinidine,  and Sulfasalazine. Currently, newer medications have been associated with drug-induced lupus, such as the new biological agents used to treat rheumatoid arthritis, etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira). Typically, once the suspected medication is stopped, symptoms should decline within days, usually symptoms disappear after one or two weeks. Drug-induced lupus can be diagnosed with certainty only by resolution of symptoms and their failure to recur after stopping the medication.

Drug-induced lupus erythematosus resembles systemic lupus erythematosus (SLE). It results from a hypersensitivity reaction to a medication. The drug may react with cell materials, causing the body to form antibodies that attack the body’s own healthy cells. Symptoms tend to occur after taking the drug for at least 3 to 6 months. Persons with drug-induced lupus erythematosus may have symptoms that affect the joints (arthritis), heart, and lungs. Other symptoms associated with SLE, such as lupus nephritis and neurological disease, are rare. Drug-induced lupus affects men and women equally.

Tags: , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | No Comments »

the first treatment for lupus

Friday, November 13th, 2009

New York, Nov 12th – GlaxoSmithKline Plc said on Thursday it expects its experimental lupus drug Benlysta to be a “very major” product and contribute meaningfully to the company’s bottom line. Glaxo and partner Human Genome Sciences Inc reported results from two clinical trials showing that patients taking Benlysta in combination with standard treatments experienced a significant improvement in symptoms compared with those taking standard treatments and a placebo.

“I believe this is going to be a very significant medicine for GSK and we are ramping up in anticipation of that,” said Andrew Witty, Glaxo’s chief executive, at the Reuters Health Summit in New York.

If approved, the drug will be the first treatment for lupus — a complex disease which causes the immune system to attack the body’s own tissue and organs — in 50 years.

Analysts have predicted the drug could generate anywhere from $1 billion to $4 billion annually.

“When you see a wide range of estimates it is probably a good thing to pick something in the middle until you get some greater intelligence,” Witty said. “Do I subscribe to numbers at either end of this huge range? Probably not at this point in time. Are we going to invest in this medicine on the assumption it will be very significant for the company? Absolutely.”

Earlier this month, Glaxo, based in the United Kingdom, and Rockville, Maryland-based Human Genome Sciences reported data from the second of two trials needed for the drug to be considered for approval by the U.S. Food and Drug Administration.

The second trial met its main goal, but the data was not quite as strong as in the first trial, which some analysts found disappointing. Witty, however, was unconcerned.

“Both studies are landmark events,” he said. “I think we are on the way to something quite special.” ( reuters.com)

Tags: , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | 1 Comment »

Her Diamonds Secret Meaning

Friday, September 25th, 2009

Lyrically, “Her Diamonds” is inspired by his wife Marisol’s 7-year battle with an auto-immune disease. “It’s really a song about empathy,’ Thomas says. Thomas’ wife, Marisol, who in recent years has struggled with this lupus-like autoimmune disease, also provided backing vocals for the title track. Please support Rob through his music and support Lupus Awareness with his music.

Tags: , , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | 1 Comment »

1 in 4000 Lupus Patients Develop PML

Saturday, September 12th, 2009

A current study examines the association between rituximab, a common lymphoma treatment and progressive multifocal leukoencephalitis (PML), a fast-moving and often fatal infection that attacks the white matter of the brain.

Hematologist and oncologist Charles Bennett, MD, of the Northwestern University Feinberg School of Medicine, is leading the project. In a recent issue of the journal Blood, he and his co-investigators reported on 57 cases, spanning from 1997 to 2008, in which patients with lymphoma, anemia, or rheumatoid arthritis developed PML after taking rituximab.

“People may think [PML is] early Alzheimer’s disease or depression,” Dr Bennett explained, noting that the infection often goes undiagnosed because the symptoms are so subtle at first. “Many of these patients have cancer and when they die, people assume it’s the cancer that killed them.”

Clinicians should look for forgetfulness, disorientation, mood changes, and any other strange neurological symptoms in individuals taking rituximab. In cases described by Dr Bennett, a brain biopsy and spinal tap confirmed the diagnosis of PML after a brain MRI and biopsy demonstrated a brain that appeared to have been eaten away. Rituximab has become the third monoclonal antibody to be associated with PML, according to a statement issued by Dr Bennett. The other 2 agents are Raptiva, which was taken off the market in April, and Tysabri, which was withdrawn from the market for 1.5 years because of similar concerns.

In lymphoma, rituximab binds to the CD20 protein, which is found on the outside of B-cell lymphomas. This action ultimately helps destroy the cancerous cell. “The drug has tremendous usefulness in lymphoma, but as its use expands to diseases that are not cancer, we might have to reconsider the risk benefit,” cautioned Dr Bennett.

“Some cancer patients take this drug chronically for nonfatal chronic leukemia, where the risk-benefit calculations differ from lymphoma.”

It’s not yet known how rituximab is connected to PML, or who may be at risk. Dr Bennett said the best available research exists in the area of lupus. In that patient population, an estimated 1 in 4000 develop PML.

Dr Bennett said the next step in the process is to determine the risk factors for PML in people who take rituximab. “We need to learn more about this. People have to think about the pros and cons in settings where it is being used for nonmalignant diseases,” he cautioned. People have been lulled into a false sense of security that this drug is harmless and that it only does good things. No drug is perfect.”

Tags: , , , , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | 1 Comment »

Multiple Sclerosis Cure May Also Benefit Crohn’s Disease, Lupus and Arthritis

Thursday, August 13th, 2009

Led by Jacques Galipeau, researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and the McGill University in Montreal, in an experimental treatment for multiple sclerosis, managed to completely reverse the auto-immune disorder in mice.

Calling the new treatment GIFT15, the researchers said it might put multiple sclerosis in humans into remission by suppressing the immune response.

The new treatment might also be effective against other auto-immune disorders like Crohn’s disease, lupus and arthritis, and could also control immune responses in organ transplant patients, a university statement said Wednesday. The researchers said unlike earlier immune-suppressing therapies that rely on chemical pharmaceuticals, this new approach is “a personalized form of cellular therapy which utilizes the body’s own cells to suppress immunity in a much more targeted way”.

The new treatment, or GIFT15, involves two proteins, GSM-CSF and interleukin-15, fused together artificially in the lab. Under normal circumstances, the individual proteins act to stimulate the immune system, but when they are fused, the equation reverses itself.

“You know those mythical animals that have the head of an eagle and the body of a lion. They are called chimeras. In a lyrical sense, that is what we have created,” said research leader Galipeau, who is a world-renowned expert on cell regeneration. “GIFT15 is a new protein hormone composed of two distinct proteins, and when they’re stuck together they lead to a completely unexpected biological effect,” he said.

This effect converts B-cells – a common form of white blood cell normally involved in immune response – into powerful immune-suppressive cells, he added. The Canadian said naturally-occurring immune-suppressing B-cells are almost unknown in nature and the notion of using them to control immunity is very new.

He said: “GIFT15 (the new treatment) can take your normal, run-of-the-mill B-cells and convert them into these super-powerful B-regulatory cells. “We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect. And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away.” He said there were no significant side-effects in the mice, and the treatment was fully effective with a single dose.

The research leader said multiple sclerosis must be caught in its earliest stages to be reversed by the new treatment, though clinical studies are needed to test its efficacy and safety in humans. (Nature Medicine Journal)

Tags: , , , , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | No Comments »

First Lupus Drug in Decades to Show Effectiveness

Monday, July 20th, 2009

What has been described as the first lupus drug in decades to show effectiveness in clinical trials, the announcement that Benlysta (belimumab) outperformed placebo has come as a surprised, where many had assumed the drug was going nowhere.

Earlier today, the Lupus Research Institute (LRI) and its National Coalition of state and local organizations congratulated Human Genome Sciences Inc (HGS) and GlaxoSmithKline (GSK) on what they described as the “highly promising results” of the late stage trial of their experimental drug to treat people with systemic lupus.

Benlysta (belimumab) is the first investigational human monoclonal antibody in a class called “BLyS-specific inhibitors” and is being developed by HGS and GSK under a co-development and commercialization agreement that they signed in August 2006.

BLyS-specific inhibitors recognize and inhibit the biological activity of B-lymphocyte stimulators.

Systemic lupus erythematosus (SLE) or lupus, is a chronic and sometimes fatal autoimmune disorder that not many people know about, although it affects more than 1.5 million Americans, mostly women of childbearing age. It is a leading cause of premature cardiovascular disease, kidney disease and stroke among young women, says the LRI.

The disease causes production of antibodies that attack nearly every healthy organ and tissue of the body, including kidneys, brain, heart, lungs, skin, blood and joints. The last time a treatment was approved was nearly 50 years ago, and many of the drugs currently used are nearly as toxic as the disease itself.

Support Lupus Awareness

Tags: , , , ,
Posted in Lupus Awareness Information, Lupus Awareness News | 2 Comments »

« Older Entries