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Myasthenia What?

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Myasthenia Gravis.

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Part of the draw and the reason behind my offering Blog for #12DOG posts is that I get to connect with organizations that I otherwise may never have known about.

The Myasthenia Gravis Association of Western Pennsylvania (MGAWPA) strives to educate, advocate, and support anyone who is affected by myasthenia gravis, a chronic neuromuscular disorder. Patients, family members, friends, and co-workers are able to ask for their assistance, regardless of whether the needs are medical, social, emotional, or physical.

Day of Giving is October 3rd, 2012 and the Myasthenia Gravis Association of Pittsburgh  is participating. Let’s give this organization a hand for all the help and work they do to support and aid MG patients in the Pittsburgh area. Consider making MGAWPA one of your Day of Giving recipients.

Here are a few facts you should know from the MGAWPA. They did a wonderful job in educating me so that I can highlight their work for you.

1. The onset of MG is different for every patient.

  • Generally symptoms are first noticed in the droopy eyelid and/or double or blurred vision.
  • Muscle weakness in the arms (ex: inability to brush hair or teeth, lifting things), legs (ex: trouble walking, climbing stairs, getting up from a sitting position), and neck are also noticeable. The muscles that control breathing can also be affected, leading to hospitalization.
  • A slack jaw and the inability to smile or chew food are also problematic.
  • There is no pain associated with this illness, just general muscle weakness. The weakness may affect one muscle or a group of muscles.

2. The prevalence for the onset of MG is in younger women and older men, but anyone of any age or race can get this disease.

3. Unfounded or quick muscle fatigue and shortness of breath can be signs. Symptoms increase with (normal) physical activity and decrease with periods of rest.

4. The thing to remember is that MG is NOT a progressive disease like Multiple Sclerosis or Muscular Dystrophy.  MG can be controlled and people can live a long life. Prognosis for myasthenia gravis patients depends on the patient and the key is finding the right treatment for the right person. It is important that patients take their medications, stay away from germs, and have regular appointments with their doctor.

MG is a difficult disease to diagnose and treat. Ray Beeson, MGA board member and an MG patient himself, shares that, “MGA has given me a sense of security about how I cope with (this) and with specific meds and ways of dealing with this disease. There have been numerous situations where people presenting with some of the signs have been told that “it’s just in your mind” and it has taken years and much doctor-shopping to finally get a correct diagnosis.”

He continues, “MGA provides a resource to turn to with questions about the disease; about how to manage it; what meds and treatments are available; plus, where to get and how to pay for treatments and meds that are expensive. MGA has also provided a network of professionals and patients who can help diagnose myasthenics and their families cope with how the disease affects the sufferers and their supporters.”

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Every dollar donated to support MGA impacts the lives of real people. Thankfully, due to relentless efforts to support patients where ever they are with their symptoms, effective community outreach, and the search for new and effective forms of treatment, many patients can still live active and fulfilling lives. MG has become a disease that people die with and not from.

An MG patient describes his experience in connecting with MGAWPA. “I continued going to a doctor for the MG, but I didn’t seem to be getting any better. My sister found out about the Myasthenia Gravis Association (in Pittsburgh) and I decided to give them a try. When I came to MGA, I found the staff to be friendly and knowledgeable. They started me on plasmapheresis treatments and I now can actually drive myself to the appointments.”

The MG Association, as it is today, was started in 1955 by the family of a young patient.  The National MG Foundation is composed of many smaller chapters and they are more research-oriented in their focus.  The MGA in Pittsburgh is very patient friendly, providing support groups, a weekly Treatment Center, patient-to-patient support, an informative newsletter and website (www.mgawpa.org), along with patient and family advocacy.  “We are a small organization that does great things to help our clientele.”

The MGAWPA assists 500 patients annually in the weekly Treatment Center in Pittsburgh.  They see about  4-6 new patients a month. The disease is not well-known, and is often misdiagnosed or not diagnosed quickly by doctors, who do not often see this disease in their patients. Having a resource and support system like the Myasthenia Gravis Association of WPA is crucial in the lives of the patients who come to them.

Though MGA is based in Pennsylvania, they have championed the cause and regularly assist people all over the world with materials!

The MGA of Western PA does a wonderful job with their newsletter. Read the Fall newsletter now for more information. Give them a shout out on Twitter (@MGAWPA) after you read this and connect with them on FB for answers to questions, support services information, and more! Participate in Day of Giving with an online donation on October 3rd to MGAWPA and have matching funds from The Pittsburgh Foundation make your dollar go further!

Simply Put – Another great Pittsburgh organization improving the quality of lives in innovative and caring ways for people here – and around the world!

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  1. December 3, 2016 at 3:01 AM

    A very useful post must say. I have had Myasthenia Gravis for a decade now. Sadly even some of the best doctors ask What? What is Myasthenia gravis forget about knowing its symptoms or causes.
    The awareness level of MG is dismal.
    And so after so many years I gathered courage to start speaking and writing about it on my brand new blog. Its about my life with Myasthenia Gravis and my life beyond it!!!
    http://miracleme.cpallavirao.com
    Thanks again for the valuable post.

  2. January 11, 2016 at 3:09 AM

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  1. October 3, 2012 at 7:59 PM

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