What is Superficial Siderosis?
This diagnosis has been a journey for us with a long way to go. We were like most people who were on the cusp of their retirement; we had a clear vision of how our life was going to be. The job, with long hours on the road traveling away from home, would become a memory. We were planning a trip to Italy and talked of hiking the Grand Canyon.
Instead, we find ourselves adjusting to this new rhythm of life. Simple goals like making the walk to the end of our road every day, planning a diet that revolves around medication and enjoying early retirement together.
Superficial Siderosis is sneaky. It creeps in unnoticed and lies in wait for years. Unexplained symptoms start to make their appearance, one after another, until one day you realize something is very wrong.
Finally a diagnosis, and your first thought is
"Thank goodness; now we're getting somewhere."
It isn't that easy. Is it ever? One person in three million will develop Superficial Siderosis. Information is limited and downright scary. Find a neurologist or just treat the symptoms? Comb through what little research is out there and learn to live with your new life. A diagnosis of Superficial Siderosis will do that to you; tossed head first into the deep end.
Superficial Siderosis is a chronic neurodegenerative condition caused by an accumulation of hemosiderin on the surface of the brain and spinal cord. With the advent of Magnetic Resonance Imaging (MRI), it is now diagnosable unlike before when answers would only come from the autopsy table.
Hemosiderin (Iron Salts) forms after blood infiltration into the central nervous system. The average body can rid itself naturally of blood in the CNS, but in rare cases, chronic bleeding will overwhelm body defenses. Specialized cells in the CNS act as a magnet to attract this blood to the cerebellum, fifth and eighth cranial nerves, brain stem or spinal column. Iron buildup covers these areas and hardens over time resulting in a neurotoxic effect on nerve function. This progressive loss of nerve function leads an individual to present with a possible combination of over 30 symptoms.
If you, or someone you know, has been given a diagnosis of Superficial Siderosis the search for answers is beyond frustrating. Learning to cope with this rare disorder is a challenge, so a support network is important.
You're welcome to follow along as we look for answers, and hopefully, you can find some answers too.
What is Ataxia?
Superficial Siderosis associated ataxia is used to describe a symptom of incoordination which is linked with your degenerative changes in the central nervous system. This form of ataxia is a symptom of your medical condition and is different from Hereditary or Sporadic Ataxia which is separate neurological disease.
“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 mind, we’re not medical researchers or doctors. Initial recruitment included 48 participants. Nine withdrew from the study because their insurance wouldn’t cover the…
Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready to move forward and welcome a new chapter for 2018. I hope you’ve had a chance to check out our new Tidbits And News page. We needed an area to post bits of news we run across or research topics.…