I have started this site to help other people like me, who have Myasthenia Gravis and struggle with it every day. I also want to inform those who know nothing about this disease, so that others can understand what we go through every day. This disease does not get the recognition it needs. We need help to find more medications and treatments for it. In time, I hope to start a research foundation for MG, so that we can find a cure. I almost died from this disease and I don't want anyone else to go through what I've gone through and what I still go through every day. I want to help find that light at the end of the tunnel.

 Myasthenia Gravis (MG) causes weakness that gets worse with exertion and improves with rest. The disease first appeared in medical reports in 1672, but didn't earn its name, which literally means "grave muscular weakness," until the 1880's. MG is an autoimmune disease -- a disease that occurs when the immune system attacks the body's own tissues. In MG, that attack interrupts the connection between nerve and muscle -- the neuromuscular junction. Muscles that control the eyes, face, neck, and limbs are commonly affected.


An interesting fact about Myasthenia Gravis, is that it is sometimes called the Snowflake disease, because it manifests itself differently in each individual, just as every snowflake is uniquely different.


Right now there are very few treatments for MG, and only one major medication, called Pyridostigmine (Mestinon), which actually only treats the symptoms of the disease, it does not cure it or cause it to go into remission. It only helps to make the disease somewhat manageable. Corticosteroids, like Prednisone, are also commonly used to treat MG. Azathioprine (Imuran), Mycophenylate Mofetil (CellCept), Cyclosporin (Neoral, Sandimmune), and Cyclophosphamide (Cytoxan, Neosar) are most of the other medications used to help treat MG. Sometimes a combination of these different medications and treatments can be used. Most of the medications attack this disease at the immunologic level with the objective being to stop the body from attacking itself, which is basically what MG does, attack its own nerve receptors for the muscles. One of the first things they (the doctors) will do when you have been diagnosed with MG, is a Thymectomy, which is a surgery where they remove your Thymus Gland. For some people that is their miracle and they are basicly healed after that, but for most it is only routine, it may or may not help. Two of the main treatments for MG are: Plasmapheresis (also sometimes called Plasma Exchange) and IVIG (Intravenous Immunoglobulin). Plasmapheresis is done with an intravenous line and is used to remove antibodies from the blood. IVIG is an I.V. that injects nonspecific antibodies into the body to slow down the immune system's production of its own antibodies. Both of these treatments only last for a certain amount of time and then must be performed on a regular basis to keep the MG symptoms from returning.


There is only one way to test someone to see if they have MG; It's called a Tensilon test. It is a medication that is administered through an I.V. and if you are positive for MG, when this drug is administered, you will be "instantly healed". Meaning, all the MG symptoms you have will disappear, but only for about 5 minutes at the most, and then all the symptoms will return. Unfortunately, this medication cannot be made into a treatment for the disease. One of the reasons for this being that it can cause unusually high and dangerous heart rates. No matter how much they try and scale the effects of the medication down, it is still too strong to be given regularly. If you want to see a great example of this test watch the video above.

If you have any questions, would like me to add more information on MG or want more info. on my own struggle with this disease, want to send some support my way, or even tell me about your own struggle with MG, I would love to hear from you! Thanks! God Bless! You can e-mail me at arwyn@jpusa.org

I hope to be updating this site often and I will eventually be adding my own story of my personal struggle with this disease and let you know how I am doing now. In the future, I also hope to be able to offer buttons or wristbands to help spread awareness for MG, so more and more people will know our struggle and hopefully will help out in some way. And, with the support I get from all that I will try and raise money to go directly towards research for Myasthenia Gravis. Thanks for coming to my site, I hope you learned a lot and will keep my quest in your thoughts and prayers! God Bless!

I'm not sure where any research is being done for MG right now but I am doing my own research to find someone who is. When I do find out where research is being done I will post that information so donations can be sent there. Or if you want to donate now you can always e-mail me and let me know. I am saving up money now to donate when I find someone to donate to.

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