Rare but Aware: Speaking Up for Myasthenia Gravis

(BPT) – Imagine experiencing muscle weakness so severe you have difficulty with even the simplest daily tasks, such as speaking, swallowing, chewing, and even breathing normally.1 For people suffering from myasthenia gravis (MG), a rare, debilitating neurological disorder, this may be a daily reality.

In the United States, a rare disease is one that affects fewer than 200,000 people.2 While the number of patients affected may be small, the impact of rare diseases on patients, their families, and society is profound. Many rare diseases are severe, chronic and progressive, and often times, there are few, if any, effective treatment options available for patients.

As with other rare diseases, people with MG may feel alone in their diagnosis and may lack resources and support. Patients also may face challenges in managing their disease. Today, however, there is increased awareness and understanding about the underlying cause of MG, and new research is under way to explore innovative treatment approaches.

Recognizing the Signs and Symptoms of MG

MG occurs when the body’s own disease-fighting antibodies attack the neuromuscular junction, causing tissue damage and interference with signaling between the nerves and the muscles.3,4 Patients with MG may at first experience weakness in their eye muscles, which typically progresses to include weakness of the muscles of the mouth and throat, limbs and muscles responsible for breathing.3 Symptoms can include drooping eyelid, blurred vision, slurred speech, difficulty chewing or swallowing, and weakness in the arms and legs.1 Patients also may experience difficulty breathing, which can be life-threatening (known as a “myasthenic crisis.”)5

MG Quick Facts

  • 15 percent of patients with MG do not respond well to existing treatment options.6
  • Between 15 and 20 percent of MG patients will experience a myasthenic crisis—trouble breathing where hospitalization is necessary.5

Diagnosis and Current Treatment Landscape

Because MG is a rare disease, many physicians may be unfamiliar with the signs and symptoms, leading to missed, delayed or inaccurate diagnosis. In fact, patients may wait several years before being diagnosed accurately with MG.3

There is no known cure for MG, but there are existing treatment options available that can help manage symptoms in many patients. Unfortunately, in some patients, current therapies do not adequately address the disease. In fact, as many as 15 percent of MG patients have refractory MG6—meaning they continue to suffer from the devastating symptoms of MG despite current treatments.

“MG is a debilitating disease that is often misdiagnosed because of non-specific symptoms and lack of disease awareness. Even after being diagnosed, patients may continue to face challenges with managing their MG symptoms,” said James F. Howard Jr., M.D., Distinguished Professor of Neuromuscular Disease and Professor of Neurology & Medicine at the University of North Carolina at Chapel Hill School of Medicine. “Today, however, MG is an active area of research with new therapeutic approaches currently being explored in clinical trials.” 

Getting Involved

Each June, patients, health care providers, and advocates across the United States join together to recognize and celebrate Myasthenia Gravis (MG) Awareness Month, which aims to raise the visibility of this rare disease and unite and empower the community to learn about MG and advance care for patients.

“In June and throughout the year, we urge patients, caregivers and others affected by MG to raise awareness and educate those around them about the disease by telling their story and talking about MG,” said Tor Holtan, CEO, Myasthenia Gravis Foundation of America. “Our ultimate goal is to generate awareness, renew hope, and create a community of support and strength across the country, enabling patients to live better with MG.”

Although patients with MG and their families face many challenges, progress is being made every day; MG Awareness Month is a chance to recognize MG patients’ strength and continued progress. It is also an opportunity to come together with the community to raise awareness and improve emotional support, resources, and potential treatment options.

For more information about MG, including education, support, and resources for people living with MG and their families, visit the Myasthenia Gravis Foundation of America website at www.myasthenia.org.

To learn more about Alexion’s clinical trials for rare diseases, including a study that is currently enrolling patients with refractory MG, visit www.AlexionClinicalTrials.com.

This article is brought to you by Alexion Pharmaceuticals, Inc.

References

  1. Myasthenia Gravis Foundation of America, Inc. What is Myasthenia Gravis (MG)?: http://www.myasthenia.org/WhatisMG.aspx
  2. National Organization for Rare Disorders. Resources & FAQs: https://rarediseases.org/for-patients-and-families/information-resources/resources-faqs/
  3. Conti-Fine BM, Milani M, Kaminski HJ. Myasthenia gravis: past, present, and future. J Clin Invest. 2006;116(11):2843-54.
  4. Tüzün E, Huda R, Christadoss P. Complement and cytokine based therapeutic strategies in myasthenia gravis. J Autoimmun. 2011;37(2):136-43.
  5. Wendell LC, Levine JM. Myasthenia crisis. The Neurohospitalist. 2011;1(1):16-22.
  6. Suh J, Goldstein JM, Nowak RJ. Clinical Characteristics of Refractory Myasthenia Gravis. Yale Jour Biol Med. 2013;86: pp.255-260.


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Posted by on Jul 29 2015. Filed under Health. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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