The Superficial Siderosis Patient Registry

sspr landing

  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 launch of a patient-powered registry. You are being asked to take part. Before you agree to participate in this volunteer effort, it is important that you understand what this registry is about and what will be done with the information that you provide.  The disadvantages we fight include the geographic distance between our community members and finding interested researchers or healthcare industry partners. Superficial Siderosis patient member groups on social media have been our primary means of communication. Recent Facebook group discussions led to the realization our Superficial Siderosis community needs a patient registry accessible through a web-based platform. After some consideration, it seemed the most cost-effective way to a Superficial Siderosis patient registry was to build the first one ourselves. This website takes advantage of internet security protocol, registration requirements, and restricted member login for access to profile and survey areas. Our personal information will be stored the same as yours. No information will ever be offered for sale. No identifying information will ever be disclosed without your express consent.  There are three registration…

Continue reading….

The Results Are In

Ferriprox

“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 off-label use of Ferriprox and one for other reasons. 38 people began the investigation, and over the course, two dropped out because of neutropenia concerns, four dropped for cost issues and one left for unrelated health reasons. 31 people completed the study. Each participant submitted a current neurological exam, a baseline MRI and prescribed a beginning dosage of 1,000 mg of Deferiprone taken twice daily on a five day on two days off dosage cycle. Adjustments were made to the dosage schedule for those with fatigue complaints to 500mg in the morning and 1,500mg in the evening.   All participants…

Continue reading….

A New Chapter For 2018

Living with superficial siderosis website

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. It’s an understatement to say I read a lot, so it’s always exciting to stumble across a story in mainstream media about a fellow SS’er. I’ve added a new one today.  Speaking of a new chapter One blog topic I hope to cover this year is nanotechnology. There is interesting research relating to nano-particles being combined with chelators to target hemosiderin in the brain and spine without affecting the iron levels in the rest of your body. I’ve added four new research papers to our download file menu if you care to read them.  Looking ahead We have plans to expand…

Continue reading….