Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to…
What Is Your Fall Risk?
The Dangers Of Mobility And Balance Impairment If you’re living with mobility or balance problems, this is a familiar story. You’re innocently walking, and out of nowhere, an angry rogue floor knocks you down. No reason, just walking, then BOOM, …
Managing Neuropathy Pain
Managing Neuropathy Pain Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet until the hand gets near the flame on the stove. However, an…
Dialing Down The Pain
Dialing Down the Body Pain of Superficial Siderosis Gary always hurts It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. Most days, his pain scale reads 3 or…
Finding The Right Healthy Diet
Living Your Best Life with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By…
Feed Your Brain Checking Vitamin D Levels
Protecting Cognition and Memory One detail Gary’s neuropsychologist brought up was his low vitamin D level. While it may be common knowledge calcium and vitamin D help maintain healthy bones, we had no idea their role in cognitive decline. Studies…
Follow these Seven Steps To Begin Your Chelation Experience
Chelation Therapy For Superficial Siderosis In cases of superficial siderosis, attempting to remove the hemosiderin deposits with the prescription chelator deferiprone will be an unfamiliar treatment option to most physicians. If you have made a personal decision to attempt this…
The Hazard of Blood Thinners
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…
The Long Journey Here | Neurosurgery
Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, searching for information. In May of 2015, while we were still in an early stage of information gathering after Gary’s diagnosis, I created this…
Will Neglecting Your Hearing Loss Really Hurt Your Cognitive Ability?
Hearing loss is now one of the leading causes of disability worldwide, affecting more than six percent of the population. The impact on people’s lives is substantial; difficulty with communication, social functioning, feelings of social isolation, employment opportunities, and depression.…
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,…
Facing Down Coronavirus
This has been a banner year for anxiety with the many underlying conditions Superficial Siderosis patients face daily. The lack of early information; how the Coronavirus would affect the S.S. community. These were all added stressors. We made a personal…
Is Neuroprotection The Answer?
Can The Progression Of Superficial Siderosis Be Slowed? The holy grail of any rare disorder is discovering the cure. With Superficial Siderosis, so far, chelation therapy has offered the only solution for removing the iron. Where does this leave a…
Generic Chelation Medication Set To Launch
Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new specialty generic, deferiprone, an iron chelator indicated for the treatment of patients with transfusional iron overload due to thalassemia syndromes…
Living In Upside Down World
I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had both seen patients with Superficial siderosis, so we were making a connection to share information. One of them commented we had no idea of what was heading here to the U.S. I made a mental note to do a little preparation because that’s my nature.
Changes
We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may accompany this disorder’s progression in moderate to later stages. It is comforting to realize that not every superficial siderosis patient…