June is Myasthenia Gravis Awareness Month
Written by admin2 on June 9th, 2009Filed under: Campaign Watch, Regular Contributors, Lewis Schofield
Quoting mayoclinic.com:
Myasthenia gravis (mi-uhs-THE-ne-uh GRA-vis) is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. The cause of myasthenia gravis is a breakdown in the normal communication between nerves and muscles. There is no cure for myasthenia gravis, but treatment can help relieve signs and symptoms—such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.
As many of you already know, Lewis Schofield, Irked Magazine’s esteemed and beloved Alphabet Souperintendent, has been fighting Myasthenia Gravis for the past 14 months, with all sorts of treatments and medications. After watching the rapid progression of this disease, Lewis is undergoing a thymectomy on Wednesday morning (June 10th) in the hopes the operation will force his brand of MG into remission. Read all Irked posts by Lewis >>
Quoting Lewis’ mom Elyse Bruce:
Oddly enough, Lewis, who also has Asperger Syndrome (a form of Autism), was diagnosed in April of 2008 during Autism Awareness Month and now, 14 months later, he is undergoing a thymectomy during Myasthenia Awareness Month. June has been Myasthenia Gravis Awareness Month for 9 years now as MG Associations around the world work to raise awareness of the often misunderstood and under-diagnosed disease. This year’s theme is: “Uniting For a Cure… Together We Are Stronger.” The thymectomy won’t cure Lewis’ MG but it might buy him some time if the operation forces his MG into remission. And if it goes into remission, how long will it stay there? No one knows for sure. It could be a few days; it could be a few decades. We don’t want to think of the other possibilities. Never one to let something outrageous take him down, Lewis has spent a great deal of his time raising awareness of Myasthenia Gravis along with his efforts raising awareness of Autism Spectrum Disorders.
Before going in for his thymectomy, Lewis decided to create a special video to thank his real life and online supporters who have helped Lewis battle Myasthenia Gravis in whatever way they could. He joked around on the weekend that if he had been able to put everyone into the video, it would have been a 2 hour extravaganza to rival the Grammy and Juno Awards Shows. A very special thank you goes to Andrew Gold who granted Lewis permission to use his song “Thank You For Being A Friend” in the creation of this very important video. No other song expresses so many of Lewis’ feelings towards his friends.
Click here to watch the video >>
Please take care, be well
and think healing thoughts for Lewis
on Wednesday as he undergoes his surgery
Quoting wendyusuallywanders.wordpress.com:
I still have friends and acquaintances who “forget” I am sick because I don’t look sick until I can’t walk, speak or type. There are still people who ask why I am in a wheelchair one day and not the next. They don’t get the disease and at times the sarcastic person in me wants to come out and other times I just want to cry. This can be a lonely disease to live with. So many times I want to do something or go somewhere and I can’t. There are times I can’t just pick up the phone and call a friend because I know they will never understand me or the weight of the phone keeps me from making that call.
Quoting sickofmg.blogspot.com:
Even if it’s cooler, but humid, my MG rears its ugly head and roars. It’s like walking outside and being “unplugged.” Doug’s still working on the air conditioners, so the humidity in the house is the same as it is outside, which right now is about 75% . . . I have started my “healthy eating plan” today. Exercise is such a frustration, but I do have a mini-tramp that I am going to try. Hopefully my legs won’t give out. I know I’ll have to work up to it…just a few minutes at first. When my brain is clear and I’m feeling okay I want to just jump around and dance! I love dancing. But after 2 minutes, I’m all wiped out, and can’t do anything for the rest of the day. There’s nothing like wanting to exercise, being all ramped up, motivated, whatever, and then your body betraying you by not cooperating.
Quoting blogger Billie Wages:
Come along with me. Thanks to Myasthenia Gravis I do not walk. Heard of it? Not I until my ophthalmologist diagnosed me with it. After researching it, I found what I needed—remission is possible! I am going to live my days of IVIG treatments on my Road to Remission right here before the world, be they good days or bad, bright or sunny. The Myasthenic. The Ragdoll. Me. MY Myasthenia. Please join me.
Who knew? Dogs can have MG too. Quoting small animal veterinarian Dr. Erika Olson:
Recently, I saw a patient that was diagnosed with myasthenia gravis (MG). She’s a middle-aged German Shorthaired Pointer (GSP) who was carried into the hospital by her owner because she was too weak to navigate the stairs on her own. It is always alarming when a GSP is unable to do anything short of leaping up a full flight of stairs in one bound. After her exam and her partial recovery while we spoke, I had my suspicions! Myasthenia gravis is a neuromuscular disease that causes muscle weakness. Some animals are born affected; others develop it secondary to specific types of tumors or for unknown reasons . . . The muscle weakness can also involve the muscles of the throat and esophagus which causes difficulty breathing, swallowing, excessive drooling, and regurgitation of food (which can lead to aspiration pneumonia). Some owners notice their bark changes. To diagnose the disease, there is a special test that is used to identify the presence of disease-causing antibodies. There is also an injection that helps diagnose MG. If the pet has MG, once the injection is given they are able to rise and walk normally for a minute or two. Obviously not useful as a treatment, but it can be dramatic to see! A suspected diagnosis of MG leads to a variety of other tests to look for the underlying cause and complications associated with the disease. Long-term prognosis depends on the results of these tests and response to treatment. My patient is expected to continue to lead a normal, exuberant life though she may have to take that flight of stairs one step at a time from now on.
For more info and support, please visit:
The Myasthenia Gravis Foundation of America
The Myasthenia Gravis Coalition of Canada
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AM
I’m sorry that I didn’t get to see this earlier. Please send Lewis my best now that he is recovering from his thymectomy. I hope that this will ease the symptoms of MG for him.
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Lewis – it will be okay. I was 18 when I first came down with myasthenia gravis, and after six months of wrong diagnoses and nearly dying, I finally forced a doctor to run the blood test. From then on it was a whirlwind of medicines, crazy side effects, and thymectomy. It was all really confusing and scary at the time, because I was so young and pretty much medically illiterate.
I am now 24 and have had MG for six years. Honestly, don’t put all your hopes on the thymectomy. Only now are they conducting the first controlled study, and so right now there really isn’t much reliable evidence in the literature that this is truly an effective procedure. Keep in mind there are a lot of anecdotal success stories floating around on the internet, but these have to be taken with a grain of salt. But it will definitely give you peace of mind that you’re doing everything you possibly can, because otherwise you’ll probably just wonder “what if” forever and ever. Be very careful after the procedure, because my surgery actually exacerbated the MG (as will any kind of severe body stress).
I can really relate to this article, especially when describing how depressing it is to not be able to express your personality. I’m a big talker and pride myself on making sarcastic comments, so losing that ability has always been devastating. But it always comes back eventually. I have been on Cellcept for a long time and it seems to have been pretty good at keeping the symptoms at bay. IVIg works well too, although it goes away after a month. And avoid ANYTHING that riles up your immune system; always get flu shots, stay away from sick little kids, etc.
Because of all this craziness, I graduated from college with a degree in neuroscience and will be attending medical school soon. I still have never met another MG patient, although I’ve gained so much knowledge about the disease over the years. If you ever have questions, feel free to email me! Good luck! And always remember – the symptoms are reversible. It sucks, but we are really so lucky to have such an easily treatable neuromuscular disease. Stay strong – mentally, if not physically.
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I wanted to update people now that we’re 10 days past the surgery.
Lewis is healing well but is still pretty wiped out by the surgery itself. His MG symptoms are still very active however it could take up to 2 years for MG to go into remission after a thymectomy if it’s going to go into remission.
He’s storyboarding his next video which will chronicle the before life and after life of going through major surgery. The focus is on making surgery a less frightening event in a child or teen’s life than it was for him.
You can’t help but love a kid that thinks about things like this and then creates ‘em.
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I was diagnosed with MG in 1998. I recovered. Please read my story athttp://www.toxicteeth.org/forms/
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Freya Koss
PA COALITION FOR MERCURY-FREE DENTISTRY