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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And that’s exactly what they’ve done. After researching potential treatment options Jordan and his family decided to enroll him into a clinical trial for a new treatment for patients with Duchenne muscular dystrophy. The family had so much hope that this could help their son.

Now, Jordan and his family are celebrating the success he’s had in the clinical trial for the treatment which was received Accelerated Approval by the FDA for Duchenne patients who have a specific mutation like Jordan. His mom says it’s been incredible to watch all the positive changes he’s been experiencing, during the four years since he’s been receiving the treatment. Jordan who is now 12-years old, says he tries to make every day the best day ever.

Jordan is one of an estimated 10,000 boys in the U.S. with this rare disease. Early signs of Duchenne include delayed ability to sit, stand or walk. Patients face increasing loss of mobility and by adolescence many require the use of a wheelchair. In teenage years patients begin experiencing problems with heart and lung function that leads to serious, life-threatening complications.

Laura McLinn talks about her son Jordan’s journey and how she and her family approach every day and never gave up hope. She’ll also discuss how she has become an advocate for helping others with Duchenne muscular dystrophy and will offer advice to other parents about options available that can help.

Interview courtesy: NS Pharma

#laura #mclinn #dreams #jordan #duchenne #muscular #dystrophy #disease #muscles #family #journey #treatment #clinical #hope #fda #mutation #positive #change #approach #ns #pharma

The post A REMARKABLE MOTHER FIGHTING FOR HER SON TO LIVE HIS BEST LIFE INSPIRES & HELPS OTHERS WITH A PROGRESSIVE RARE MUSCLE DISEASE appeared first on Good News!.

STORIES OF INSPIRATION
During Holiday Season
https://www.hemlibra.com/

In recent years, people with hemophilia A have found hope thanks to important developments in the treatment of this bleeding disorder. For some living with this chronic condition, this may mean experiencing the coming holiday season with a new outlook on living with hemophilia A.

Guy is in his mid-30’s and was diagnosed with hemophilia A at birth. As a child, he experienced spontaneous brain bleeds at 18-months-old and again at three-years-old, which led to him becoming legally blind and experiencing seizures. Guy remembers going to the hospital multiple times a week for treatment and having over 20 surgeries. As a young adult, he avoided certain activities that might lead to a bleed.

Hemophilia A is a rare genetic bleeding disorder, typically diagnosed at a very young age, in which a person’s blood does not clot properly, leading to uncontrolled bleeding that can occur spontaneously. There are approximately 20,000 people who have hemophilia in the United States, with hemophilia A being the most common form.1,2 For people diagnosed with this rare condition, it can be a life-altering diagnosis. Even with treatment, hemophilia A can result in bleeds in muscles and joints that may lead to joint damage and chronic pain.2

People like Guy can face significant challenges managing their condition.3 After decades of accepting this as his normal, he began a different medicine that he takes once a month and has experienced fewer bleeds requiring treatment. Guy recently earned a master’s degree to pursue a career in strategic marketing. He has so much to celebrate this holiday season–it will be particularly special as his first as a newlywed after getting married in a small ceremony this past June.

Dr. Amy Shapiro, a hematologist-oncologist and Co-Founder of the Indiana Hemophilia and Thrombosis Center along with Guy Law, to discuss the impact this latest treatment continues to have for people living with hemophilia A.

Interview is courtesy: Genentech

1 Hemophilia Federation of America. Hemophilia A. https://www.hemophiliafed.org/understanding-bleeding-disorders/what-ishemophilia/hemophilia-a. Accessed October 12, 2020.
2 Mayo Clinic. Symptoms and Causes. https://www.mayoclinic.org/diseases-conditions/hemophilia/symptoms-causes/syc20373327. Accessed October 12, 2020.
3 Bauer, K. A. (2015). Current Challenges in the Management of Hemophilia. American Journal of Managed Care, 21(6).

#hemophilia #hemlibra #amy #shapiro #indiana #thrombosis #guy #law #hope #inspiration #holiday #season #bleeding #blood #disorder #chronic #condition #diagnosed #seizures #hospital #muscles #pain #oncologist #treatment #marketing #genentech #america

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