Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a case of rummaging through Google to find things of relevance and chatting to other patients who had been diagnosed with… Read More... "What the SSRA Means to Me"
Tag: Superficial Siderosis
Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve shared what’s been going on with Gary. Our living with superficial siderosis. I’ve been reluctant to… Read More... "Running on Empty"
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect globally with those diagnosed with superficial siderosis, you might be surprised how many SS patients do not have a Facebook… Read More... "Community Forum Launches"
Infratentorial Superficial Siderosis of the Central Nervous System Explaining the process requires some big and complicated words. Not big as in real size or number of letters in a word but in the sense of consequences. Yes, it progresses slowly… Read More... "Superficial Siderosis"
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling neurological conditions as well. In late 2001, three years after the removal of a benign brain tumour, I was diagnosed… Read More... "The Struggle Of Dual Neurological Conditions"
Superficial Siderosis (Infratentorial superficial siderosis (iSS)) is a disorder that develops over time when long-term bleeding into your central nervous system (CNS) overwhelms the body’s natural defenses. As a result, when blood cells break down, neuro-toxic iron particles are left traveling throughout your spinal fluid. In the act of self-protection, your system reacts by releasing proteins to trap these iron particles by encasing them. Read More... "What is Superficial Siderosis"
My Life With Superficial Siderosis In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition which is caused by bleeding into the cerebrospinal fluid over a sustained period of time. I had a brain tumour removed from… Read More... "A Day In My Life"
The holy grail of neurodegenerative disease research is discovering a pathway to healing—reversing neural damage, either through regeneration or surgical reconstruction. Our nerves control multiple biological functions. The complexity of cranial nerves has made regenerative therapies exceptionally challenging. The olfactory… Read More... "Combating Neural Damage"
The eve of a new year is a time for reflection. When I look back on our lives at the end of 2009 I’m reminded of how carefree we felt. A long wished for grandbaby joined our lives, dreams we… Read More... "The Decade that Was"
Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early research papers we found scared us to death. At first glance, the prognosis seemed… #Deferiprone #Hemosiderin #SuperficialSiderosis Read More... "The Decision To Choose Chelation Therapy"
The SSRA Story Meet Our Founders, Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience as parents when your child is diagnosed with superficial siderosis, an ultra-rare neurodegenerative disease that… Read More... "Superficial Siderosis Research Alliance"
I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks you may face if you choke while eating or drinking. Gary has been evaluated on a regular basis since that… Read More... "Small Victories"
The Ripple Effect Of Chronic Illness Most of us will never plan on becoming full-time caregivers. However, some will tackle this role with laser focus. There are no second thoughts or questions. Someone we love, a spouse, parent, or child,… Read More... "The Ripple Effect Of Chronic Illness"
Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the journey to a diagnosis and then care. Too often hope dwindles leaving you to wonder how we can make our… Read More... "Making Our Voice Heard"
The Patient Experience With The Neurology Ride A visit to Gary’s neurologist often brings to mind when you step up to ride the tallest, most twisty ride in an amusement park. Your ride begins by slowly inching along, anticipating a… Read More... "Surviving The Neurology Ride"
iSS can be associated with significant neurotologic and cerebellar morbidity; the recurrent SAH variant is frequently clinically symptomatic, has a shorter latency and greater neurotologic disability. In these cases, a thorough search and management of a covert source of bleeding may stop clinical progression. The frequency and clinical course of radiographic iSS after traumatic and post-aneurysmal SAH is largely unknown. Detection of radiographic iSS after trauma or aneurysm bleeding suggests that the slower clinical course could benefit from an effective intervention if it became available. The use of cochlear implants is a valid alternative with advanced hearing impairment. Read More... "Focused Neuro-Otological Review of Superficial Siderosis of the Central Nervous System"