June Is Dedicated to Myasthenia Gravis Awareness

www.myasthenia.org

Myasthenia gravis (MG) (Mai-uhs-thee-nee-uh   gra-vuhs) is a rare, chronic, heterogeneous, and unpredictable autoimmune disease.

MG results from a problem in signaling between nerves and muscles. This problem happens in the neuromuscular junction (NMJ), the place where nerve cells and muscles communicate. Generalized myasthenia gravis (gMG) is caused by antibodies in your immune system that get in the way of signals between nerves and muscles at the NMJ that can weaken muscles throughout the body.

Shanaz, a single mom and interior designer in Los Angeles, was living an active life in 2022 when she began experiencing trouble swallowing and was diagnosed with gastroesophageal disease. That diagnosis didn’t feel quite right to her. In 2023 her symptoms took a turn for the worse: She lost her vision and couldn’t talk or swallow. At that time, she was correctly diagnosed with gMG.

Those living with gMG may experience a variety of symptoms that can make activities of daily living very challenging – activities like talking, chewing, swallowing, breathing, brushing teeth or hair, or even getting up from a chair. Those living with gMG may appear healthy on the outside, but what is happening on the inside can seriously impact every part of life.

Shanaz’s story highlights the challenges of misdiagnoses and delayed diagnosis, and underscores the critical role of self-advocacy in navigating complex medical conditions. Shanaz will tell her story. She’ll be joined by Dr. Said Beydoun (Suh-eed Bay-doon) who will discuss the symptoms and triggers of gMG and a treatment option that addresses the underlying causes of the condition.

Interview courtesy: UCB, Inc. (References available on request)

#gMG

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Good News Speaks with the Cast and Creators of the documentary “Innerstate”!

#innerstate #classic #good #news #cast #creators #documentary #autoimmune #disease

The post Innerstate! “Classic Good News” 06/26/07 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

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