Is My Ferriprox Working?

MRI Superficial Siderosis

The Big Question   First of all, we know the mind of Superficial Siderosis patients is full of questions. But if you’re one of the few who uses Deferiprone you want to know is my Ferriprox working? The original Pilot Saftey Trial of Deferiprone by Dr. Levy and Dr. Linas offered the first evidence chelation using Ferriprox could be successful without severe side effects. A longer term observational study began March 2012. Clinicaltrials.gov: Phase IV Observational Study of Deferiprone (Ferriprox®) in the Treatment of Superficial Siderosis. The estimated completion date is this month (Dec. 2017) with data collection ended in March 2017.…

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Testing, Testing, Hope

Test 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 changed from a PPO next year to an HMO, so we suffered few weeks of panic after we received notice from BCBS of Texas. HMO networks are not popular with doctors in our rural area. Seven specialists and one PCP currently provide care for Gary,…

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Understanding Ferriprox Part Two

Ferriprox-deferiprone

Understanding Ferriprox Part Two   Trying to remove Superficial Siderosis associated hemosiderin deposits with Ferriprox (deferiprone) will be an unfamiliar treatment option to your doctors. You need to gather as much reliable information as you can. Having information packets available when you meet with a new physician can save valuable time. Step one: track down the open research online, download and print out multiple copies. We passed out this research to every doctor along the way. We were able to present a credible, study-backed argument for trying Ferriprox. Our first meeting was the neurosurgeon who initially ordered the tests that…

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Understanding Ferriprox

Ferriprox-deferiprone

Understanding  Ferriprox (Part 1)   There seems to be some confusion when it comes to understanding Ferriprox and Superficial Siderosis.   Ferriprox (Deferiprone) is a prescription drug whose primary purpose is treating people who have transfusional iron overload due to Thalassemia syndromes. Deferiprone was designed to bind to this iron and remove it in a process called Chelation therapy. It’s my understanding if a person suffers from iron overload they feel better when chelation lowers iron levels. Superficial Siderosis patients do not have too much iron in their bloodstream. They have iron deposits (hemosiderin) stuck to areas of their brain…

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Superficial Siderosis Webinar

Superficial Siderosis Webinar

In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology Dr. Mi explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what your treatment options are in this easy to understand 30-minute presentation.

To view a written transcript of this webinar click here

To download the transcript and slides in .pdf form click here

 

 

 

Huge thanks to James Hines for coordinating this webinar and Dr. Micheal Levy

The Decision To Choose Chelation Therapy

Ferriprox-deferiprone

The Decision To Choose Chelation Therapy Superficial Siderosis Diagnosis, Chelation Therapy, and Deferiprone Researching on your own can be tricky. Superficial Siderosis is a serious diagnosis and the early research papers we found scared us to death. At first glance, the prognosis is horrendous so when we came across Pilot Safety Trial of Deferiprone in 10 Subjects With Superficial Siderosis-Michael Levy and Rafael Llinas ¹ we started looking into chelation as a therapeutic option. I printed out every reference I could find online about deferiprone. You or a family member are diagnosed with Superficial Siderosis, an unheard of medical condition. Everyone around…

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