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dmama7

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Myasthenia Gravis Association of Kansas City
June 17, 2010

I am a 37 year old mother of 3 that lives everyday fighting Myastenia Gravis, I have had open heart surgery to remove a thyomoma, I was not told much about the disease, until 4 years later when I am in a crisis and being treated as a acholoic and paramedics are insisting that I have taken a over dose of narcotics... I could not move could not talk and hearing everything that was happing thinking that I was going to die.. doctors not knowing how to treat, until my husband told them that I take mestanon, and that I had MG, the ER physician had to google what it was, I since by the nurse that also googled what myasthenia was gave me this wonderful support system, I have now found out that there is someone else going through what I go though every day the struggles that i have just to move and to sometimes even to breath, thank you so much for the care and the resourses that you give us when know one else even knows what are disease is

The Great!

I've personally experienced the results of this organization in...

when i needed to find a doctor

Ways to make it better...

If I had to make changes to this organization, I would...

to make it more accessable for every one

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

the information given

The kinds of staff and volunteers that I met were...

wonderful and helpful

If this organization had 10 million bucks, it could...

educate more people on what MG is and how to treat it

Ways to make it better...

I would have known sooner how to access it

In my opinion, the biggest challenges facing this organization are...

reaching all of the patients

One thing I'd also say is that...

that I needed help and found resources to help me with the local chapters

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

MY ROLE:
Client Served & used this foundation to help others.