Life Expectancy of Superficial Siderosis Patients

life expectancy

Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That…

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Staying Woke:

Superficial Siderosis Awareness

Get Woke   I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandkids ages range from a first-year college student, high school, elementary to toddler. Conversations can be eye-opening. You learn a lot: who’s salty, why something’s lit, and being woke. If you…

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Railroad Spike: Chronic Headache Pain

chronic headache pain

Living With Chronic Headache Pain   Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your head. The not so good days it feels like…

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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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Rethinking Cholesterol Medication

myelin axon nerve cell

Rethinking Statin Use   Are you a long-term user of popular statin drugs on the market? Studies are convincing it’s time to rethink cholesterol medication use if you’re in a high-risk, neurodegenerative patient group. If you are already fighting nerve degeneration, there is evidence your cholesterol medication may be contributing…

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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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Whole New Ballgame: ReSound Linx²

The two-week update on the ReSound Linx² hearing aids The question most asked, “Do you still like the new hearing aids?” Short answer, yes. But there are so many features we’ve just barely scratched the surface. Classified as Smart Hearing Aids, they can be set to work in tandem with your smartphone…

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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…

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