The Anticoagulant Effect on Active Bleeds Suppose you have an identified or suspected active bleed. In that case, your doctors need to be aware of the hazard blood thinners pose to your hemosiderin layer. Your body may have taken years…
Information on how you can navigate through treatments, therapies, doctors and life with superficial siderosis
Do I Still Have An Active Bleed?
Arriving at the Hospital The day had finally arrived; it was time to venture to the hospital in Cardiff for my first lumbar puncture in nearly two years. I have had many lumbar punctures since I was 8 years old,…
A Sneak Peek Into The COVID-19 Immunization Journey
Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine. For those who also face the dual concern of balancing a rare disorder’s symptoms against contracting a highly contagious virus,…
The Superficial Siderosis Patient Registry
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful engagement with researchers. A patient-powered registry (PPR) or patient-powered research network (PPRN) empowers individuals to contribute to translational science in meaningful ways.
Who Doesn’t Love a Freebie?
Everyone loves something free but too often there’s some kind of string attached. The item might be free but the cost of shipping and handling is outrageous, or in claiming the free item you end up in a never-ending membership.…
Six Steps To Becoming A Better Friend
We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with a little effort to become a better friend. The challenges…
When you are the RARE in Rare Disease
Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has the slightest idea of the battle you are about to face. A rare neurodegenerative condition so uncommon it’s often…
Decoding The Superficial Siderosis MRI
Tracking Your Hemosiderin There has been a definite increase in people diagnosed with superficial siderosis. The improvements in neuroimaging have resulted in advanced iron sensitive 2-D and 3-D MRI techniques. Thankfully you can now be diagnosed in vivo and, if…
Tips For Developing Great Patient-Provider Communication Skills
Communication must be a two-way street Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in as much confusion by the end of your appointment as at the beginning. Healthcare providers…
20 Strength Exercises When You’re Fighting Mobility Problems
Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. For example, Gary is limited to lifting 10lbs so he doesn’t cause fresh bleeding into his CNS. Standing or sitting with free weights is a…
Five-Two Diet Plan Update
Five-Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it. Two and a half…
Life Expectancy of Superficial Siderosis Patients
It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare illness like superficial siderosis thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it intensely personal. The early…
Life As A Germ Magnet
Life as a germ magnet. A healthy person strolls through daily life never giving a thought to living with a weak immune system. A person with superficial siderosis often finds out the hard way caution should be the word of…
Superficial Siderosis Webinar Transcript
Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy To view the recorded webinar you may watch here Download a copy of the transcript and slides here Click on the individual slide to view larger Hi, my name…
Benefits of Green Tea
Green tea has enjoyed such a surge in popularity that more than a few people are skeptical. Every healthy living blog touts the benefits of green tea for everything from cardiovascular health, diabetes or weight loss. That will raise…