Sorry to Inform you of this, But I dont live a normal life!

[JayBee]

There is a little statement on the main page of the MG of Western Pa that I find a little upsetting. I have seen this statement on other MG pages and while it displeases me to see it around the net as well, I find its placement on this page to be quite inexcusable.

In referance to MG patients you will see a sentance that states.

"most patients can live normal lives with the help of medication"

This statement is far from the truth, and this statement has obviously not been made by someone living with MG. This statement also proves my point that it is a complete waste of money to donate to a charitable organization whos goal is to "Raise Awareness" Seriously someone needs to give me a break. Could someone please tell me how it takes a large portion of donated money to raise awareness. And even so wouldnt comments like "most patients can live normal lives with the help of medication" undermine any true attempt to educate the general public about the battles we with MG face.

I do not consider, slurred speach, droopy eyes, the inability to put gloves on, an inability to run, inability to lift more than 10pds above my head, inability to smile, difficult chewing, inpaired breathing, daily napping, and the wide host of signs and symptoms that are a part of MG as a part of a " Normal Life"

So when a friend of mine learns that I have MG should he think twice about asking me to come over and help him move furniture? After all, if he read your front page he would think "most patients can live normal lives with the help of medication" Of course I could educate him about MG and "Raise Awareness" but I thought that was the duty of MGAWPA ? I mean Hey, Im not holding silent auctions or $100 a plate dinners to raise awareness. If I was raising money, Id be putting the money toward the development of drugs like en101 or rEV576.

To those of you at the MG clinic , I do appreciate your work, and I am sorry If I am coming across as being spiteful, but I am not the only person that feels this way, and I challenge someone in the organization to rethink the wording of the statement "most patients can live normal lives with the help of medication"

[lamison]

Hi Jaybee,

Nice post! I dont live a normal life either. I take prednisone,mestinone and imuran hahahaha. I also have apheresis every 7 days. Thanks to all of this I only have to have my kids help dress me once in awhile. Im just glad I live a normal life.

[Barb L.]

Dear JayBee and Lamison,

Our staff has worked together to provide this response to your post. We take very seriously our goal to assist patients with MG and to "help to raise awareness" of this difficult and often undiagnosed illness. We are sorry that our statement offends you and falls short of the reality of what your lives are like living with MG. We have removed the statement from our Welcome Page. We feel your pain and frustration. We challenge you to help us find better words that are accurate but at the same time provide hope to people seeking assistance. Part of having a rare disorder is always seeking to learn from others with the same problem as well as educate others, and provide the tools in which you can advocate for yourself! We seek to empower you!

While we agree that not all MG patients live their former “normal” lives, we still believe that anyone with a chronic problem needs to establish a “new normalcy”. Many people learn to pace themselves, to still enjoy the things that are most important, with some adaptations. We do understand that change is not easy for any of us, let alone for someone with MG. We encourage, and challenge all patients to define their own “new normal”’. What was once considered normal before your diagnosis has changed most likely forever. Complying with the doctor’s recommendations regarding medication and other forms of treatment, finding balance in your life, and maintaining a positive attitude can minimize a lot of these symptoms when you are not having an exacerbation. Admittedly there are those who are resistant to treatments and medications, but most patients find they can minimize symptoms with balance, attitude, and medications. We are always in awe of those who struggle to live normal lives with MG. It humbles us to meet and work with you.

We are a small but important nonprofit agency and can afford to employ only four individuals, to serve about 400 people. Aside from potential mission drift, putting money into drug development is a job for researches, drug companies, and organizations with service beyond the local or regional level. Our resources are available to serve the individual and Western Pennsylvania community and are not broad enough to address the expenses associated with research.
We would like to extend our services to you which, as always, are free. Our primary purpose is to provide direct support to you and others in your situation. Donations provided to MGA are in place to carry out our mission which is to address the medical, social, and emotional needs of all persons affected by myasthenia gravis and to disseminate educational information to persons with myasthenia gravis, their families, and the medical community. You are always welcome to attend our monthly support group meetings and learn from others and allow others to learn from you.

We look forward to seeing your recommendations to enhance our Welcome Page with a message of truth and hope. You are important to us.

Sincerely,

MGA’s Staff
Barb, Ginny, Amanda, and Donna

[JayBee]

Barb L. The work of the Mga staff at the mgawpa is extremely appreciated. I spend alot of time talking with many people around the US who are not so fortunate to live so close to such a great team that specializies in MG. And while many who I talk to with MG do not feel that they live normal lives and many have told me they find such comments that aY we do as being frustrating. Please do not feel that such criticizm is directed to anyone in a personal manner. In response to the statement/question "We challenge you to help us find better words that are accurate but at the same time provide hope to people seeking assistance." Id like to say that While the struggles of MG patients vary greatly from difficulty eating, walking, lifting arms, grooming, talking, laughing, smiling and at the very worst even breathing. Thankfully due to a resentless effort to find new and effective forms of treatment many patients can still live active fulfilling lives as MG has become a disease that people die with and not from.