Reduced ejection function (EF) after one year of MPA

[Wizzi]

Hi, my 12 year old son has a MPA that has hit his kidneys. The exams are fine, but just yesterday they told us that the contractile capacity of his heart has reduced modestly. We do not know why yet: they believe it was the fault of the drugs (Ciclofosfamide or Prednisone) since the disease has been in remission for more than 9 months.

So these days we are very worried, even if the values ​​of the kidneys are fine.

Did it happen to any of you?

Is it reversible?

This is a very helpful group for me because doctors are good but they have no time to explain excatly everything

wizzy

[michichgo]

Hi Wizzy.

I'm so sorry to read of your son's diagnosis and ongoing health issues. I don't have any knowledge of the particular medical condition your son has involving his heart (for whatever reason: disease or treatment), as a fellow MPA-pal, I felt compelled to reply.

Have you reached out to the Vasculitis UK support line or if in the States, like me, the Vasculitis Foundation? One or both might be very helpful. Also, given his young age, he might greatly benefit from a vasculitis research hospital. Also because of his age, said facilities may waive or reduce costs involved in his treatment. MPA, as I'm sure you know, is a rare form of an already rare disease and it would be incredibly beneficial to your son, you and the remainder of your family, to find knowledgeable medical and mental support.

Online you'll find vasculitis and even MPA specific support groups (Facebook has many groups, including one for kids and teens). Join them and encourage your son to seek out those with similar conditions. It really helps to know we're not alone; because you really arent!!!

I hold your son in my thoughts and prayers. Keep the faith, maintain courage and strength and be an advocate for you and your son. God speed!

Michele (MPA for 5 years, with kidney involvement)