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Superficial Siderosis Standard Of Care

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In the United States, there is usually a national standard of care for a particular diagnosis. A documented clinical guideline for your physician to follow. No matter where you live geographically, your physician should have access to a standard treatment protocol. Physician education and a worldwide Standard of Care policy are two topics we as advocates need to push. Medical students may briefly learn about superficial siderosis during their training, but it presents so rarely (if ever) diagnosis is often considered inconsequential or untreatable.

This guideline does not exist for Superficial Siderosis.

There are treatment options that were not available five years ago. The progression of superficial siderosis is better understood now. The knowledgeable physician can now offer alternatives to slow the neurodegeneration. Iron chelation will not prove fruitful for every patient, but we are seeing positive reports coming in from some early patients.

The first problem is the use of Deferiprone for iron chelation is still viewed by many physicians as nothing more than experimental. They dismiss the existing studies. Too small. Not enough evidence. When you do find a provider willing to try chelation the dosage protocol varies between doctors so much you can’t possibly track its efficacy.

Secondly, whether you live in a country with an NHS system or the U.S. with private healthcare insurance, your care is dictated by cost. Someone overseeing your healthcare has a vested interest in keeping their expense down. The letter writing and appeal process for treatment approval will exhaust you.

A recognized national or worldwide Standard of Care Policy for superficial siderosis would ensure everyone who opts to receive chelation treatment would be following the same clinical guideline.

We are pleading with the neurological community to submit a clinical guideline for peer review and forward it to the Agency for Healthcare Quality.

This diagnosis is devastating enough. We need to use our voices to tear down the roadblocks we face on our journey.

 

 

 

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5 Replies to “Superficial Siderosis Standard Of Care”

  1. Maggie Dittmeier

    My husband s on facebook, i have successfully avoided it all thee years, it is tempting to want to chat with others who have this; but i am a procrastinator !!!

    • roriandgary

      Hi Dan, It’s a very scary diagnosis to be sure. If you care to talk to others with the same diagnosis, you can join the Facebook group listed on our home page. The group is private, so there are no worries about asking any question you may have or if we can help we are always willing to try.

  2. Stosh Drygula

    I’ve been on ferriprox for five month now and I don’t feel any different. I have a MRI in a couple of weeks I’ve been told it takes years to see a difference. We shell see.

    • roriandgary

      Stosh, I don’t think you should expect to feel a difference while on Ferriprox unless it’s one of more fatigue. Ferriprox will not improve your current symptoms or the reverse any degeneration that has already happened. Ferriprox is meant to try to remove your hemosiderin (iron) deposits so the damage to your nerves will eventually stop and the degeneration will also stop. Ferriprox may be working slowly but as long as iron remains in your CNS, the damage will continue. Our hope is to avoid the progression that we know will be the final outcome of Superficial Siderosis if nothing at all is done. The outlook for someone who chooses to let nature take it’s course is very bleak.

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