The Struggle With High Cost Medications

copay struggle

Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat something. Try to work. Order your meds. Unless you’re lucky enough to have perfect drug coverage the last one is always a heartbreaker. People who battle chronic illness often struggle to cover their high-cost co-pay share of prescription medications. Newly diagnosed patients are often not aware of the one…

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Becoming A Better Friend To The Chronically Ill


If you are fighting a battle with a rare disease or are chronically ill, you are familiar with the challenges you face daily. Sometimes the same can’t be said of your friends, family or acquaintances. This blog post is for everyone who knows someone fighting a battle, not just with superficial siderosis but any rare or chronic condition. No one ever intentionally wants to hurt someone’s feelings or cause them distress. Intentional or not it…

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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 28th, and the results have been published. This blog post is our cliff note version of the study, keeping in…

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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 word fatal is a definite attention grab. The day we found out about superficial siderosis I read that statement and my heart dropped. Three years…

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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 follow social media, you see it everywhere. It stays with me, this word. Woke. People are willing to be engaged.   It’s Up To Us…

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