Tag: Ferriprox

Ferriprox-deferiprone

Understanding Ferriprox

There is some confusion when it comes to understanding Ferriprox and superficial siderosis. Ferripriox (Deferiprone) is a prescription drug whose primary purpose is treating people who have transfusional iron overload due to Thalassemia syndromes.¹ Deferiprone was designed to bind to this iron and remove it in a process called Chelation therapy. It’s my understanding if a…

Ferriprox

The Results Are In

“Does Deferiprone provide a clinical benefit to the superficial siderosis patient?”   If you remember, the April 2017 edition of The Neurology Journal gave us an early peek at what the study findings might be in the final revision of Two-year Observational Study Of Deferiprone In Superficial Siderosis¹. The study was released this past December…

Test Hope

Testing, Testing, Hope

The Whirlwind Test Tour We’ve been doing the whirlwind testing tour with our many specialists these past few weeks. Not only was it time for our quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since starting on Ferriprox this past year. Our health insurance network is being…

treatment protocol

Superficial Siderosis : Education and Standard of Care

Superficial Siderosis physician education and a Standard of Care policy are two areas that need work. Doctors touch on superficial siderosis during their medical training. But it presents so rarely during their everyday practice it’s no wonder a diagnosis is either considered inconsequential or untreatable. Even when presented with new research some physicians feel reviewing…

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