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 Frustration Of Hearing Aid Down

hearing bubble

If hearing aids are your lifeline to the world, you get what a pain it is when one goes down. When both go down at the same time, it’s a tragedy. If this happens to someone you care about, be prepared to step up. Frustration is the polite description of what is coming. Gary had complained his hearing aids didn’t seem to be working as well. We realized his hearing might have just gotten worse…

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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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Neurology Roadtrip

superficial siderosis on the brain

We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic nurse are all in Louisiana. Gary travels to Arkansas for his electrophysiology cardiologist, neuropsychologist, and neurology.…

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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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