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Sara Gorman's Pillbag Fundraiser for LFF

Sara Gorman’s Pillbags was born out of necessity. When founder Sara Gorman was diagnosed with systemic lupus at the age of 26, she knew there had to be better way to travel with her pills than in a plastic, clunky pillbox. When she couldn’t find a solution on the market, she invented one of her own.  Today, Sara Gorman’s Pillbags offers two styles of patent-protected bags in an array of bright, colorful fabrics.

Designed to carry a week’s worth of medication, the Pillfold features 7 secure zippered pouches, with morning and evening compartments, to keep pills safe, secure and accessible. No more pills in the bottom of a purse, or lost in the corners of a suitcase. The Pillfold is easy to fill and cute to carry. What better way to travel in style!

Also available is the Pillpouch, designed to carry up to six prescription bottles. Hidden inside a stylish drawstring bag, medication will be safe & accessible - and no one has to know what’s inside!

With every Pillbag sold, 5% goes to lupus charity. During the fall months of September, October, and November, all donations will go directly to the Lupus Foundation of Florida. Support the cause and get a dose of style with a Pillbag today. The Pillbags are available at www.pillfold.com, on Amazon.com, and at retail stores across the country. Sara is also the author of “Despite Lupus: How to Live Well with a Chronic Illness”, and blogs about life with lupus at www.despitelupus.com.

Individualized Patient Decision Making for Treatment Choices among Minorities with Lupus

Jasvinder Singh, M.D., associate professor of medicine in the Division of Clinical Immunology and Rheumatology at the University of Alabama at Birmingham, has been approved for a $1.5 million, three-year funding award from the Patient-Centered Outcomes Research Institute. Singh is the first member of the UAB faculty to be funded by PCORI.

 

The award was one of 71 extended nationally, totaling more than $114 million over three years, to fund comparative clinical effectiveness research designed to answer questions most important to patients and those who care for them.Singh’s project, titled “Individualized Patient Decision Making for Treatment Choices among Minorities with Lupus”, will develop a computer tool called a decision aid to help doctors and their African-American and Hispanic lupus patients with kidney disease choose the best treatment for each individual patient.

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A Dermatoogist Disusses Lupus

Systemic Lupus Erythematosus (SLE) is a devastating autoimmune disease that can affect nearly every organ system in the body. The skin is no exception, and in fact, may be involved in 70-80% of cases. An equal number of patients may experience abnormal sun or ultraviolet light sensitivity, called photosensitivity. There are also unique forms of lupus that involve predominantly the skin associated with photosensitivity with little or no blood or internal organ involvement. These include Discoid Lupus Erythematosus (DLE), now called Chronic Cutaneous Lupus Erythematosus (CCLE), Subacute Cutaneous Lupus Erythematosus (SCLE), and the much less common Neonatal Lupus Erythematosus which affects newborns. For this reason, I think it is important for dermatologists to be aware of these lupus variants and become comfortable with managing the diagnostic evaluation of such cases, if not the treatment, which is somewhat more complex.

All of the lupus variants are considered connective tissue diseases and therefore have features in common and sometimes overlap or coexist with other well-known connective tissue diseases: scleroderma, now called Progressive Systemic Sclerosis, Dermatomyositis, Rheumatoid Arthritis, and Sjogren’s Syndrome. Because all of these conditions have prominent skin and mucous membrane manifestations, the medical dermatologist should be able to diagnose and distinguish them from one another or emphasize their overlapping features.

The following cases show that the efficient use of time and testing by the dermatologist can help to find the correct diagnosis and render the appropriate treatment in a cost-effective manner in only one or two visits.

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Depression, anxiety common in SLE patients

Nearly half of patients with systemic lupus erythematosus had at least one mood or anxiety disorder, and slightly more than one-third had at least one personality disorder, the results from a small cross-sectional study demonstrated.

"When our results, including the onset time of mood or anxiety disorders, are considered, these disorders seem to be secondary to the severity of lupus rather than play a primary role in the exacerbation of SLE," Turkish researchers led by Dr. Faruk Uguz wrote. "However, it is unclear whether there is a biological basis of this condition or psychological reaction to the severity of SLE."

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Changing Your Relationship with Medication

When faced with a diagnosis of chronic illness, the first reaction for many people is to “go natural.” There is an abundance of evidence that lifestyle has an impact on health. What we put into our bodies, what we rub on our skin, and the things we inhale from the environment have the potential to build up or tear down health.  While some conditions may improve or even resolve as a result of lifestyle changes  there are times when allopathic treatment options must considered.

 

According to the Centers for Disease Control, 125 million Americans have at least one chronic illness or condition. In other words, more than one in three people have a chronic disease. A chronic disease is any medical condition that lasts for several months and often for life. Medication may be necessary to bring these diseases under control, alleviate debilitating symptoms, slow the progress of disease, or prevent permanent damage.

 

The majority of people resent taking medications. Every time they take a dose and every time they refill a prescription, they have a tangible reminder that they are sick. In addition, medications have varying degrees of side effects. As a result, people “forget” to take their medications.

 

Like it or not, you have a relationship with your medication. You get to choose whether the relationship is good or bad. It all starts with what you think.

 

The first step in change is always awareness. Pay attention to your thoughts in relation to your medication. Are you thinking about how much you hate to take drugs? Are you reciting a mental list of possible side effects? Observe your thoughts for a week. Write them down. Read the list. Are there any thoughts that are not grounded in fact?

 

The second step is to make an effort to learn how each medication helps you. What are the benefits? Think about the benefits as you take your medications. For example, if you take biologics for rheumatoid arthritis, you would think, “This medication prevents my joints from deteriorating so I can remain mobile.”

 

The third step is to cultivate gratitude. Your mind is your most powerful tool. Yes, it stinks to have a chronic illness, but you have it. Think about it. There has never been a better time to be sick. One hundred years ago you would probably have gone undiagnosed. There were precious few treatment options even if you were diagnosed.

 

When you take your medication think:

                I am thankful that I live in a time and place where I could be diagnosed and receive treatment.

 

Studies show that when a patient has faith in their doctor and treatment, their health improves significantly.

(This article, written by LFF Program Director Linda Ruescher, will appear in the October issue of Healthy Cells Magazine.)

RedHill Biopharma Announces Positive Pre-Clinical Results for Lupus With RHB-104

TEL-AVIV, Israel, Sept. 10, 2013 (GLOBE NEWSWIRE) -- RedHill Biopharma Ltd. (Nasdaq:RDHL) (TASE:RDHL) (the "Company" or "RedHill"), an emerging Israeli biopharmaceutical company focused primarily on the development and acquisition of late clinical-stage, proprietary formulations and combinations of existing drugs, today announced positive results from a pre-clinical study with RHB-104 for the treatment of systemic lupus erythematosus (SLE), a systemic autoimmune disease causing inflammation and damage to tissues in various parts of the body. In light of the positive results, the Company is currently assessing the next steps in the clinical development program, including a possible Phase IIa clinical study.
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Sleep Disturbance Common in Women with Lupus

According to a report in The Egyptian Rheumatologist, women with systemic lupus erythematosus experience greater sleep disturbance than healthy women. More than 75% of women with lupus have poor sleep quality. Even though there was a higher frequency and clinical severity of sleep problems in women with lupus, only 30% reported using sleep medication.
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Seven Tips for Better Sleep

Feeling crabby lately? Or simply worn out? Perhaps the solution is better sleep.

Think about all the factors that can interfere with a good night's sleep — from pressure at work and family responsibilities to unexpected challenges, such as layoffs, relationship issues or illnesses. It's no wonder that quality sleep is sometimes elusive.

Although you might not be able to control all of the factors that interfere with your sleep, you can adopt habits that encourage better sleep. Start with these simple sleep tips.

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Lupus Awareness Items

Orange "Life without Lupus" wrist bands

Purple "Lupus: Find the Cure" car magnets

UV light sensitive wrist bands

The Lupus Book: A Guide for Patients and Their Families

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