Five-Two Diet Plan Update

Five-Two Plan

Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it.

Two and a half years in and we can report our high/low iron foods cycle diet plan is a success at reducing Gary’s ferritin level. His body seems to have leveled out naturally and hovers in a channel now.

You can read the original post:

Following The Low Road: Low Iron Diet

UPDATE DECEMBER 2017: Gary has been following this diet plan for 30 months now. His serum ferritin level now stays between 11.2 and 9.9. His lowest level recorded was 8.8. He cycled off his Ferriprox for a week, and we iron loaded his diet until he was back in the mid 9 level.



Is My Ferriprox Working?

MRI Superficial Siderosis

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…

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Your Life As A Germ Magnet

compromised immune system

Germ Magnet Immune System Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial Siderosis will often find out the hard way that caution should be the word of the day. Every day we’re…

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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…

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Understanding Ferriprox Part Two


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…

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Understanding Ferriprox


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…

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Superficial Siderosis Webinar

Superficial Siderosis Webinar

In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology 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



Superficial Siderosis Webinar from Living With SS on Vimeo.


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

Navigating The Iron Food Road

mri cSS

Finding The Iron Content Of Everyday Foods   I’ll be honest – this is a tough one – no, you don’t have to follow the 5/2 diet cycle while on Ferriprox. Gary does because we’re trying to get our money’s worth. In March of 2014, when first diagnosed, the radiology…

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Following The Low Road:Low Iron Diet


Giving Ferriprox A Chance   When we decided to give Ferriprox a chance, we weren’t aware how hard getting your health insurance company to approve a tier 5 drug for off-label use is. Luckily, we have a hematologist experienced in gaining approval for high-level medications for his patients. Five months passed…

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Chipping Away: Ferriprox


Chipping Away: Ferriprox   Starting Down The Chelation Road   It was a big day when the first bottle of Ferriprox arrived at our door. Our hematologist had laid out what would be happening during chelation in some pretty easy to understand terms: “Picture the iron that is covering the…

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