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Gwyneth’s Story

Gwynn was diagnosed with Churg Strauss vasculitis In March of this year. She is currently receiving chemotherapy and high doses of steroids in hopes to put the disease into remission. Churg Strauss is a very rare disease and is incredibly rare in children.

Since being diagnosed Gwynn has been treated with several chemotherapy medications and large amounts of steroids in hopes of putting the disease in remission. Despite aggressive treatment Gwynn's disease is still not under control. We have begun to exhaust treatment options and Gwynn's doctor based on advice from a specialist at the Cleveland Clinic is currently requesting the insurance company allow us to treat Gwynn with Orencia which to date has never been used to treat Churg Strauss.

 

Latest Journal Update

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Good News!!
I spoke to our insurance company and as long as Gwynn receives the medication inpatient, which the infusion clinic in the Oncology clinic is considered then the 20% copay does not apply after we have hit out max out of pocket..Which we hit easily by April every year!

I spoke to her doctor tonight and we will be starting it in conjunction with her next scheduled treatment. It will be a long infusion, probably a full day affair. Sounds like some people feel kind of icky during and right after the infusion but it usually doesn't last much longer than that day. I am praying that adding the IVIG will be the answer! This poor kid has been through so much and I can't wait to have her feeling better!