Funding for MG Research and Care

[Michelle Gonzaba]

With so many diseases and limited funding available, it’s hard for a rare disease like MG to get the funds it needs for research and care.

For what aspect of research/care would you like to see more funding in the MG community?

[Bill Suphan]

Getting a proper initial diagnosis is often frustrating, confusing and dangerous.  Funding to put MG in the minds of medical professionals when they are first approached by a patient with MG symptoms would alleviate a boatload of problems.

[AGASimpson]

I wish there had been more research on diet and MG. My son’s medication did start working until we took out dairy from his diet. Was it a correlation? We don’t think so. My teenager can feel the difference in his performance when he stops paying attention to his diet and exercise ( that is through for all of us, isn’t it), but his doctors are never interested in our holistic approach. They will never even ask about his diet or supplements, and when we volunteer the information, they never mark that in their record.

Someone has to prove that, like with many aspects of our self-care, we first change the things we can and then let the medication work and perform to its optimal capability. ( just a note here, I believe in Western Medicine, and I’m grateful for the doctors and nurses that helped my son during the MG crises, but I don’t like that we are trying to fix stuff with medications only, not recognizing that many behaviors need to follow to optimize the process).

[AGASimpson]

Another element that I truly believe needs to be addressed: according to our doctors at Stanford Children’s health, no research tracks kids with MG after they become adults.

Two years after his first crisis, my son is now off the prednisone and in remission. During our last visit, the doctor told us that a large percentage of kids go into remission, but they do not know precisely because there is a lack of data after they leave pediatric neurology.

How is that even possible with current technology? We should be able to fix that and start tracking it now to help the future generation.

[Author]

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