Lupus

2023 - 1 - 30

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Image courtesy of "Lupus Foundation of America"

Global Experts Report a Lupus Spectrum Definition May be Needed ... (Lupus Foundation of America)

In a new paper published in Lupus Science & Medicine, experts from the ALPHA Global Advisory Committee discuss how a lupus spectrum definition may help ...

Now in its solution implementation phase, this newly published clinical paper will help to operationalize the highest priority solutions for addressing barriers to clinical care, drug development and access to care for people with lupus. To date, the GAC has identified key barriers to improving lupus outcomes, as well as identified and prioritized actionable solutions for three overarching issues: clinical care, drug development and access to care. “Our research, analysis and discussions have identified the need for a better understanding of the natural history of this disease, a clearer definition of lupus, and application of biotechnology advancements to assist with accurate and timely diagnosis.” [Addressing Lupus Pillars for Health Advancement (ALPHA) Project](https://www.lupus.org/partnerships-and-collaborations/the-alpha-project), a global initiative spearheaded by the Lupus Foundation of America (LFA), a Global Advisory Committee (GAC) of lupus experts report that lupus disease ambiguity is negatively impacting people with lupus. - Leverage emerging research and work with the US Food and Drug Administration and other global regulatory health agencies to consider the expansion of the definition of lupus for drug development efforts. In a new paper, “ [Lupus spectrum ambiguity has long-term negative implications for patients,](https://lupus.bmj.com/content/10/1/e000856)” published in Lupus Science & Medicine, experts discuss how moving toward the development of a lupus spectrum definition may help address critical health care obstacles facing people with lupus and improve the time to diagnosis.

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Image courtesy of "INSIDER"

It took me years to get my lupus diagnosed. I want to help others. (INSIDER)

Narae Yun experienced finger pain and exhaustion in her early 20s. It took years for her to get a lupus diagnosis. This is Yun's story, as told to Kelly Burch.

The rash isn't painful, and I found myself thankful to have it because I knew it would help me get a diagnosis. Just before my diagnosis, I was in so much pain that I couldn't brush my hair or sit on the toilet without help. During a trip to Puerto Rico with my boyfriend, I finally found proof. At that point, I was relieved. I spent years researching my symptoms. When I felt good, it was almost easy to forget about my illness. Later, I started experiencing prickling sensations throughout my body. She was suggesting a more-common condition that could have explained my symptoms. Behind the scenes, it was a different story. I slept about 14 hours a day on weekends, for instance. I was living that, working at an investment-banking company and going on runs around the Big Apple. Looking back years later, I can see there were symptoms that I didn't notice.

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Image courtesy of "Lupus Foundation of America"

New Study Showcases Key Differences Between Males and ... (Lupus Foundation of America)

While socioeconomic factors continue to exist as a barrier, a new study has found major clinical and health literacy differences between males and females ...

Men with lupus are an understudied demographic, and the findings from this study contribute to the small, but growing, amount of research exploring differences between males and females living with the disease. The study described and compared characteristics of males and females with lupus by analyzing electronic health record and survey data. The study revealed several differences in disease signs and symptoms, healthcare experiences, and health outcomes between males and females. [Get Lupus Research Headlines Emailed to You](/node/2215) Researchers studied 1,462 people (126 males and 1,336 females) with lupus in the National Institutes of Health (NIH) All of Us Research Program. However, only females of races other than Black/African American and White specifically reported delayed care due to cultural differences with more frequency.

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