Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Or does the fact RLS affects 8% of the population¹ suggest it’s simple law-of-averages… Read More... "The Question Of Restless Leg Syndrome"
Author: Rori Daniel
No, I’m sorry we can’t. It’s become our standard answer to most invitations now. Our niece sent a text last month. Hey, we’re going skydiving do you guys want to come? I was so shocked I asked if she meant… Read More... "Camping with a Chronic Illness"
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… Read More... "When you are the RARE in Rare Disease"
We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides up into the heart of Arkansas, but it seems we can’t escape the unplanned detours lately. We headed out with… Read More... "Summertime Neurology Blues"
Decoding the Superficial Siderosis MRI 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… Read More... "Decoding The Superficial Siderosis MRI"
The Role Of Chelation In Superficial Siderosis There is some confusion when it comes to understanding chelation therapy and superficial siderosis. Deferiprone (Brand name Ferriprox) is a prescription medication whose primary purpose is treating people who have transfusional iron overload due… Read More... "Understanding Chelation Therapy"
We’re proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Find her powerful, insightful and informative blog site here. – thesilentbleed.co.uk Fear is a powerful emotion. Anxiety shows no sympathy. Fear destroys… Read More... "The Power Of Community"
Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy, he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for… Read More... "Meet Robert Cameron"
When Mealtime Becomes Scary Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated process that demands a perfectly coordinated effort between your brain, nerves, and… Read More... "The Danger Of Dysphagia"
Searching For Clarity With Hearing Loss Conversation for people with sensorineural hearing loss can feel like a never-ending game of hangman or charades. The clues are there, but the most critical letters (sounds) are missing, so you wind up playing… Read More... "New Technology With Hearing Loss"
Occipital Nerve Blocks For Chronic Headache It was Gary’s first pain-free moment in 12 very miserable years. Complete pain relief. I want to read those words over and over. Finally, a chronic headache or migraine sufferer will understand the long… Read More... "Taming Chronic Headache Pain"
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… Read More... "The Frustration Of Hearing Aid Down"
Neurology Roadtrip We made the journey to Gary’s quarterly neurology appointment this week to find an answer to his chronic headaches. Since he left the private healthcare sector last January and entered the VA system, long out-of-state road trips are… Read More... "Neurology Roadtrip"
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 the… Read More... "The Deferiprone Trial Results Are In"
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… Read More... "Five-Two Diet Plan Update"
Stress And Depression Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss, balance problems, or nerve dysfunction are life-changing, but the single most shared symptom the members of our SS community battle… Read More... "Thread of Depression"