Category: Education

Information on how you can navigate through treatments, therapies, doctors and life with superficial siderosis

Six Steps To Becoming A Better Friend
We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with...
By Living With Superficial Siderosis Published October 31, 2018 Education
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 joined together in a grassroots effort to support the...
By Living With Superficial Siderosis Published June 10, 2018 Education, Research
Decoding The Superficial Siderosis MRI
Tracking Your Hemosiderin There has been a definite increase in people diagnosed with superficial siderosis. The improvements in neuroimaging have resulted in advanced iron sensitive 2-D and 3-D MRI...
By Living With Superficial Siderosis Published May 17, 2018 Education
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 as much confusion by the...
By Living With Superficial Siderosis Published May 3, 2018 Education
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. For example, Gary is limited to lifting 10lbs so he doesn’t cause fresh bleeding into...
By Living With Superficial Siderosis Published March 19, 2018 Education
The Struggle With High Cost Medications
Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat something. Try to work....
By Living With Superficial Siderosis Published January 19, 2018 Education
Five-Two Diet Plan Update
Five-Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an...
By Living With Superficial Siderosis Published December 26, 2017 Education
Life Expectancy of Superficial Siderosis Patients
Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy,...
By Living With Superficial Siderosis Published December 22, 2017 Education
Your Life As A Germ Magnet
Germ Magnet Immune System Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial...
By Living With Superficial Siderosis Published December 2, 2015 Education
Hemosiderin in the Cerebellum
Putting A Face On The Enemy We’ve all read the descriptions of how hemosiderin deposits (Iron Salts) form. Do you sit looking at the MRI scan results wondering just where we are...
By Living With Superficial Siderosis Published June 29, 2015 Education