Livingwithss
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.
Due to the severe nature of the disease, in 2018 the Social Security Administration added superficial siderosis to the Compassionate Allowance list of conditions that allows for the fast-tracking of disability claims
What is Superficial Siderosis?
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 for those diagnosed, but what if those early years are spent searching for an explanation of random symptoms? Imagine living through a decade of endless testing and frustration with no answers.
Superficial siderosis develops when toxic iron molecules are curbed by a protein called ferritin. Together this forms a layer of hemosiderin that settles in various areas of the brain and spinal cord that are in contact with cerebrospinal fluid. Long-term exposure is toxic to the tissue underneath resulting in hearing loss, imbalance, dizziness, weakness, numbness and bowel/bladder dysfunction. Although easily identified by magnetic resonance imaging (MRI), superficial siderosis is often confused for other progressive neurological conditions such as multiple sclerosis, Parkinson’s, or multiple system atrophy.
MY BLOGS
- LIVING WITH SUPERFICIAL SIDEROSIS https://livingwithss.com/
LATEST ARTICLES ( 148 )
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When Small Details Equal Giant Victories
Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease... Read more
Posted on 21 August 2018 HEALTH -
Countdown To The Last MRI
Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing the clock trying to schedule wha... Read more
Posted on 01 August 2018 HEALTH -
The Question Of Restless Leg Syndrome
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? Read more
Posted on 22 July 2018 HEALTH -
Camping with a Chronic Illness
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 sky diving do you guys... Read more
Posted on 16 July 2018 HEALTH -
When You Are the RARE in Rare Disease
Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has... Read more
Posted on 04 July 2018 HEALTH -
Summertime Neurology Blues
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... Read more
Posted on 20 June 2018 HEALTH -
The Superficial Siderosis Patient Registry
Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have... Read more
Posted on 10 June 2018 HEALTH -
Cookie And Privacy Policy
Living With Superficial Siderosis invites you to read our Cookie and Privacy policy We use an opt-in email system for notification of new articles when they ar... Read more
Posted on 24 May 2018 HEALTH -
Our Superficial Siderosis Community: Meet Rhys Holmes
Meet Rhys Holmes Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist... Read more
Posted on 22 May 2018 HEALTH -
Decoding The Superficial Siderosis MRI
2016 MRI Superficial Siderosis " data-medium-file="https://i1.wp.com/livingwithss.com/dir/wp-content/uploads/2017/12/Sense-Head-8.jpg?fit=300%2C300&ssl;=1"... Read more
Posted on 18 May 2018 HEALTH -
Understanding Ferriprox
There is some confusion when it comes to understanding Ferriprox and superficial siderosis. Ferripriox (Deferiprone) is a prescription drug whose primary purpos... Read more
Posted on 04 May 2018 HEALTH -
Tips For Developing Great Patient-Provider Communication Skills
Communication must be a two-way street Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in... Read more
Posted on 03 May 2018 HEALTH -
The Power Of Community
We’re proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Find her powerful, insightful and... Read more
Posted on 30 April 2018 HEALTH -
Neurodegenerative Vision Problems
When Your Eyes Have A Mind Of Their Own You move your eyes more than your heart beats. Vision problems often are one of the mysterious, unexplained symptoms... Read more
Posted on 23 April 2018 HEALTH -
The Common Thread Searching For The Unexplained
Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease database... Read more
Posted on 08 April 2018 HEALTH -
Exploring Ayurveda For Cerebellar Ataxia And Pain Control
Western medicine is innovative, but if you search through PubMed, you find very few drug trials for degenerative cerebellar ataxia. Read more
Posted on 28 March 2018 HEALTH -
20 Strength Exercises When You’re Fighting Mobility Problems
Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. Gary, for example, is limited to lifting 10lbs, so he... Read more
Posted on 20 March 2018 HEALTH -
20 Strength Exercises When You’re Fighting Mobility Problems
Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. Gary, for example, is limited to lifting 10lbs, so he... Read more
Posted on 20 March 2018 HEALTH -
What’s Your Fall Risk?
If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an... Read more
Posted on 12 March 2018 HEALTH -
What’s Your Fall Risk?
If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an... Read more
Posted on 12 March 2018 HEALTH