Listen to “Hispanic Heritage Month (September 15th – October 15th) THE IMPORTANCE OF ACTING EARLY WHEN LIVING WITH LUPUS” on Spreaker.

Hispanic Heritage Month (September 15th – October 15th)

THE IMPORTANCE OF ACTING EARLY WHEN LIVING WITH LUPUS
Recognizing the Disproportionate Impacts of Lupus on Hispanic and Latinx Communities

Women of color are disproportionately affected by systemic lupus erythematosus (SLE), the most common form of lupus. SLE is a chronic, inflammatory disease that can result in permanent damage to major organs.[1] Notably, it is estimated that 21 percent of those living with lupus in the U.S. are Hispanic.[2] Patients of color, including Hispanic people living with SLE, also have significantly higher rates of lupus nephritis (LN), a potentially life-threatening complication of lupus, compared to White patients.2

Hispanic and Latinx individuals may also face distinct challenges that can impact access to healthcare that may make managing the disease even more difficult, such as language barriers.[3],[4]

Fortunately, early intervention with the use of FDA-approved medications can help reduce the risk of organ damage progression.[5]

In honor of Hispanic Heritage Month, on Tuesday, September 24, Guillermo Valenzuela, M.D. is available to discuss the effect of lupus on the Hispanic and Latinx communities. Dr. Valenzuela, who is the Medical Director of the Internal Rheumatology and Immunology Specialists medical center, can also discuss the unique challenges these communities face and the importance of early disease intervention.

Interview is courtesy: GSK

#hispanicheritagemonth #actingearly #livingwithlupus #lupus

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YOU GOT THIS KID AND QUINNIPIAC UNIVERSITY PROFESSOR

Got this Kid Sponsors and Speakers

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Got this Kid Awardees

Listen to “You Got this Kid Sponsors and Speakers” on Spreaker.

Listen to “YOU GOT THIS, KID! Leadership Foundation (YGTK!) because someone very close to me suffers from LUPUS, a debilitating auto-immune disease.” on Spreaker.

The post YOU GOT THIS, KID! Leadership Foundation (YGTK!) because someone very close to me suffers from LUPUS, a debilitating auto-immune disease. Professor Kimberly Ann DiGiovanni, PE appeared first on Good News!.

With Lupus Awareness month coming up in May, I wanted to introduce my client Marisa Zeppieri. Marisa is a speaker, author of the new memoir CHRONICALLY FABULOUS, and founder of the NY nonprofit and social community, LupusChick. This past year has been very hard for many of us but that’s nothing new for Marisa. Being diagnosed with Lupus, having five small strokes and 35+ hospitalizations later Marisa is resilient and is giving people hope. Marisa also found that marijuana for medical uses really helped her pain.

“My primary doctor suggested medical marijuana about four years ago when my pain became intolerable after years of getting worse. We were both not keen on adding a prescription pain med to my daily regimen. So, I got my license in NY for the med marijuana and was shocked how well it worked literally within minutes. I felt like it was a game changer for me in terms of taking enough of the pain away so that I could function and do every day things that were becoming difficult for me like grocery shopping, cooking, cleaning, getting dressed, etc. It also in time took enough of the pain away, or lessened it that I felt like once again partaking in some of my favorite hobbies. I feel like it has helped me in my creative endeavors as well as it helps me relax and focus on my painting vs the pain.”

Lupus is a chronic inflammatory autoimmune disease with no cure, and in some cases the disease is fatal. 90 percent of patients are women. More awareness and medication options are needed. Surveys are still showing that up to 41% of people are not comfortable shaking hands or sharing food with someone with lupus even though the disease is not contagious. LupusChick/Marisa reaches almost 400K people a month, spreading awareness, education and resources on latest research, news, and inspiring content to let patients know they can continue to live the life they have always dreamed of.

Recently, Marisa wrote her first book, Chronically Fabulous which is an inspirational memoir and self help book (with recipes included). Chronically Fabulous teaches readers with chronic illness that a diagnosis or disability does not have to define them. With personal stories from Marisa and tips and techniques, readers learn how to pursue their deepest passions and reinvent themselves, using the gifts and talents already bestowed on them, as they move forward in their journey.

Chronically Fabulous is currently on pre-order available for purchase at Barnes & Noble, Amazon, Broadleaf Books and Book Shop. Marisa’s memoir and cookbook will officially be on sale and in stores on May 4, 2021. Just in time for the month of May which is Lupus Awareness Month.

If you are interested in hearing how Marisa has overcome many obstacles, her advice on living with an autoimmune disease or how her chronic illness hacks benefitted friends and family during the pandemic please let me know!

I am looking forward to hearing from you!

Have a great weekend.

Best,

Rachel

About Marisa:

Marisa Zeppieri is a speaker, author of the new memoir CHRONICALLY FABULOUS, and founder of the NY nonprofit and social community, LupusChick.com. LupusChick serves to educate and empower those living with lupus and other autoimmune diseases and chronic illnesses. The community reaches almost 400K people per month, and was the launching point for CHRONICALLY FABULOUS, which inspires readers to continue striving toward their goals and not let a diagnosis or disability define who they are. Marisa is a former health journalist and Mrs. New York, and has been a fierce advocate and speaker in the world of chronic illness for over 13 years. She has spoken for and acted as a consultant for Astra Zeneca, GlaxoSmithKline, Novartis and Janssen Pharmaceuticals, and has served as the keynote speaker for UMASS Med School, Simmons College, and Patients Like Me. She currently serves as a contractor for The Department of Defense’s Lupus Research Program, the host of the Lupus Foundation of New England’s TILLY series, and her LupusChick story is featured as the 35th chapter of Lady Gaga’s new Anthology, CHANNEL KINDNESS.

She is also always exhausted and loves to nap

The post With Lupus Awareness month coming up in May & Marijuana & Autoimmune Disease appeared first on Good News!.

Leading Rheumatologist Discusses How Communication and Support of Lupus Patients is Critical www.usinlupus.com
Approximately 322,000 Americans have systemic lupus erythematosus (SLE), a common form of lupus, but the burden of the disease still remains largely unknown to the public. Results of a new Gfk Roper survey of the lupus community released today highlights a communication gap between people with SLE and the people who care for and about them.

The Roper survey evaluated the daily and long-term impact of lupus on health, family relationships, career and quality of life.
The results of the national survey found that communication challenges are significant between people with SLE and their physicians and supporters (family members or friends).
On March 28, 2012, Joan Merrill, M.D., chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, a leading national lupus center, will discuss the results of the survey and how stronger communication can help physicians and supporters improve relationships with lupus patients and better understand the burden of this chronic disease.

Talent/Guest: Dr. Joan Merrill

Dr. Merrill is Member and Head of the Clinical Pharmacology Research Program at the Oklahoma Medical Research Foundation (OMRF), a leading center for lupus research in the United States. She is board certified in internal medicine and rheumatology. Dr. Merrill also is OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center, and Adjunct Associate Professor of Medicine at New York University Medical Center. She is a member of the Systemic Lupus International Collaborating Clinics, serves as a consultant to the Arthritis Advisory Committee of the U.S. Food and Drug Administration, is a member of the Clinical Research Subcommittee and the Committee on Research of the American College of Rheumatology, and actively serves on grant review committees at the National Institutes of Health (NIAMS/NIH).

About Systemic Lupus Erythematosus
Lupus is a chronic, autoimmune disease that can range from mild to life-threatening. It is also a disease of flares and remissions that can affect the everyday lives of people with lupus.
About the Burden of Lupus Survey
The survey was conducted by Gfk Roper North America from July through September 2011. It involved 502 people who self reported that they had received a diagnosis of lupus, 204 supporters of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus). The survey was sponsored by Human Genome Sciences and GlaxoSmithKline

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