Livingwithss

LATEST ARTICLES ( 51 )

• Is It Time To Visit A Neuropyscologist?

  

  Your brain is a complex system that controls your body, guides your thinking, and filters emotional response. When something like superficial siderosis damages... Read more

  Posted on 24 October 2018 HEALTH

• Superficial Siderosis Standard Of Care

  In the United States, there is usually a national standard of care for a particular diagnosis. A documented clinical guideline for your physician to follow. Read more

  Posted on 10 October 2018 HEALTH

• Does Superficial Siderosis Contribute To Cardiac Arrhythmia?

  When you think life has settled in it chooses to get in your face, passing by at a crazy pace. Before his pacemaker placement, Gary’s heart rate was consistentl... Read more

  Posted on 15 September 2018 HEALTH

• 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