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…
Superficial Siderosis and CSF Leak
Superficial Siderosis and CSF Leak – An Intertwining Complication Superficial siderosis and CSF (cerebrospinal fluid) leak go hand in hand. If blood can infiltrate the CSF, then CSF can leak out as well, which is what it did in my…
Chair Yoga for Mobility and Balance
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…
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…
Just Go Home And Live With It
When Neurology Has No Answers Greetings, fellow Superficial Siderosis patients; my name is Bena Travis. I’m a 62-year-old retired florist and wedding planner living in the USA’s beautiful Western Kentucky lakes area. My husband and I live on the lake,…
Julianne’s Story
Not A Head Cold? My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island state located 240 km (150 mi) south of the Australian mainland. I was…
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…
Sometimes You Need A Win For Team Chelation
I was diagnosed with Superficial siderosis in 2015, but it was late 2017 before I finally found a neurologist who was willing to listen and help me in any way he could. He agreed deferiprone (Ferriprox) was the only treatment…
Knocking Out The Brain Zaps
Did they work the first-time round? It had been tough for me to tell if the first course of nerve blockers (Greater Occipital Nerve Block) worked now that a few weeks had gone by. I kept quite an extensive log…
Remembering What it is Like to Get Out
Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however, it wasn’t without a huge wave of anxiety. After all, I had only been out with them once in about…
Research Day
Waking up for the Big Day I woke up to a bad headacheIt is challenging to pinpoint the exact cause of Superficial… More, probably a bit of nerves and excitement about going to the best hearing institution in the United…