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linda59
@linda59

Posts: 24
Joined: Mar 23, 2016

Hi there, our son had a heart transplant following GCM. is this [...]

Posted by @linda59, Mar 23, 2016

Hi there, our son had a heart transplant following GCM. is this classed as an autoimmune disease? Sadly the disease returned but is being managed successfully, so far. Can you provide links/info re same thanks.

REPLY

Hi @linda59, and welcome to Connect. I’m sorry to hear that your son’s disease has returned. Giant cell myocarditis (GCM) is a rare cardiovascular disorder that occurs for unknown reasons (idiopathic). It is characterized by inflammation of the heart muscle (myocardium), a condition referred to as myocarditis.

I’ve included some links to more information on myocarditis, which includes treatment options, lifestyle and home remedies (http://www.mayoclinic.org/diseases-conditions/myocarditis/basics/definition/con-20027303).

How have you and your son been managing his GCM thus far?

@alysebrunella

Hi @linda59, and welcome to Connect. I’m sorry to hear that your son’s disease has returned. Giant cell myocarditis (GCM) is a rare cardiovascular disorder that occurs for unknown reasons (idiopathic). It is characterized by inflammation of the heart muscle (myocardium), a condition referred to as myocarditis.

I’ve included some links to more information on myocarditis, which includes treatment options, lifestyle and home remedies (http://www.mayoclinic.org/diseases-conditions/myocarditis/basics/definition/con-20027303).

How have you and your son been managing his GCM thus far?

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Hi Alyse,

Thank you for your prompt reply.
His condition is being managed on various immune suppressant drugs. He had an infusion of alenzetumb? Which has kept him well for the past year, thank Goodness.
He’s 26 yr old and managing it, for the most part, quite independently. Which makes things difficult as we both spend our time trying to protect each other by not asking questions! It’s so difficult.

Thanks again.
Linda

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