Time to Rare Up


Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over 7000 rare diseases join forces to raise awareness. The movement began in Europe in 2008 thanks to EURORDIS with 65 countries now adding their voices.  The theme for Rare Disease Day 2018  is RESEARCH You may be wondering what you can do as an individual to show your support. RareDiseaseDay.us is offering everyone the opportunity to take part…

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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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A New Chapter For 2018

Living with superficial siderosis website

Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready to move forward and welcome a new chapter for 2018. I hope you’ve had a chance…

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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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Welcome Accessibility


If you’re a return visitor to our website, you may have noticed the crazy color and layout changes that have been happening multiple times a day.   Gary’s eyesight has made reading more difficult not only here, but on a lot of online sites he likes to visit. Web accessibility is vital to people with disabilities, so we felt an obligation to try removing barriers that prevent natural interaction with our content. Our primary audience…

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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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Hearing Loss And The Movies

hearing loss accommodations movie captions

Technology has made settling in on the couch watching a good movie inviting for those with hearing loss. But honestly, some films are just meant to be enjoyed on the big screen. Gary’s hearing loss continues to worsen. He no longer understands the dialog on television without closed-captioning enabled. Background noises, the music or the tone of an actors voice is a muddle. We owned a restaurant for ten years. The only days we closed…

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Superficial Siderosis : Education and Standard of Care

treatment protocol

Superficial Siderosis physician education and a Standard of Care policy are two areas that need work. Doctors touch on superficial siderosis during their medical training. But it presents so rarely during their everyday practice it’s no wonder a diagnosis is either considered inconsequential or untreatable.   Even when presented with new research some physicians feel reviewing fresh data is not a priority. Need to know. If you’ll never have to treat it why bother? In…

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