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FOR IMMEDIATE RELEASE
Financial support now available for healthcare premiums, deductibles, copays, coinsurance and incidental medical expenses
Dr. Francy Shu's presented this slide as part of her presentation at a patient meeting in Costa Mesa on Oct 15, 2017. It lists the medications should MG Patients to avoid. To see the slide, please click on the link above.
Alexion Pharmaceuticals, Inc. (NASDAQ:ALXN) announced today that the U.S. Food and Drug Administration (FDA) has approved Soliris® (eculizumab) as a treatment for adult patients with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AchR) antibody-positive.
This week there was an article in the New York Times Magazine about an MG Patient.
This article was written by Deanna Power, Director of Outreach at Disability Benefits Help (www.disabilitybenefitscenter.org) DBH is an independent organization dedicated to helping people of all ages receive the disability benefits they need, or remain eligible for Social Securi
Despite it being my first year with myasthenia gravis, not knowing what was wrong with me and initially being misdiagnosed, I have been very lucky compared to some.
As I finish this article right after Memorial Day, I feel blessed to be part of such a wonderful board of directors. For those of you who do not know, the Myasthenia Gravis Foundation of California has an unpaid board. We receive no compensation with the exception that our quarterly board meetings include sandwiches and small bags of potato chips.
Although myasthenia gravis was not mentioned in “What’s Wrong with Me?,” an article by Meghan O’Rourke, that appeared in the August 26, 2013 issue of the New Yorker magazine, it plays a huge factor in the linking of all autoimmune diseases under one umbrella category.
In the year prior to my diagnosis of MG, I was on Qvar 80 inhalers, Fluticasone nasal spray, a Flovent 250 inhaler, and received the over 65 flu shot, the Prevnar 13 pneumonia shot, and two Z-Pak antibiotics for bronchitis. On January 9, 2015 I had major lower back surgery and was on Oxycodone daily for pain.
Michelle Desmond was born with post-synaptic secondary-fold congenital myasthenia gravis. But at first the doctors thought it was lipid myopathy carnitine deficiency. Early in life, she and her family faced many challenges: numerous muscle biopsies, extensive neurological testing and frequent hospitalizations. Michelle’s parents had to feed her through a gastrostomy tube and maintain her breathing through a tracheostomy tube.
Feeling tired, sleepy or fatigued may be signs of an underlying sleep disturbance. Other clues include snoring, waking up at night, morning headaches or difficulty concentrating. Poor sleep can affect a person’s quality of life, reduce productivity, lead to accidents (by falling asleep at the wheel) and worsen underlying neurological conditions (such as myasthenia gravis).
I have been lucky enough to attend the Myasthenia Gravis Foundation’s Annual Gala Dinner for the past fourteen years. (I happen to know it is fourteen years because my first dinner was just a few days after my second daughter was born). While I have enjoyed all the dinners, I have to say that this year’s dinner was my favorite.
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