You Are Not Alone

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Finding A Support Network

May 21, 2015                                                                                                                             Living With Superficial Siderosis

 

Superficial Siderosis patients, family, and friends often feel overwhelmed. Finding a support network is a must. It’s vital to remember you are not alone. The first thing we did after Gary’s diagnosis was search Google. What is Superficial Siderosis?

Google led us to an excellent blog site by New Zealander Dave Hill. It offered the only information written from a patients point of view. Dave’s blog explained a little of what we were about to face in easy to understand language. When Dave began reaching out via email, he found only 50+/- recorded Superficial Siderosis cases worldwide. He raised the number of documented SS’ers to over 100 confirmed cases. Dave no longer updates his blog due to health reasons but thanks to his efforts, fellow sufferers began to make a connection.

Our Support Community

Social media makes it easy to connect with people from across the globe. As a result of Dave’s efforts, a superficial siderosis group began on Facebook. The members give the newly diagnosed a chance for day to day interactions, compare notes, and share stories. Most of all, it’s a private place to vent on the awful days when people surrounding you don’t have a clue what you are experiencing.

This group has now grown to over 200+ (update 2017) 300+ members, a diverse mix of  Superficial Siderosis patients, professional caregivers, and family.

The Silent Bleed

The camaraderie of this Facebook group has generated an enthusiastic team of people who are trying their best to launch a charity dedicated to funding research for Superficial Siderosis.

The Silent Bleed website provides information, resource links, research fundraiser project ideas, and most importantly hosts “Ask a Specialist.” This question-answer forum allows you to submit written questions to Dr. Michael Levy regarding your condition. Dr. Levy will answer them in groups of ten questions providing the most up to date information available.

UPDATE: The Silent Bleed, located in the United Kingdom, is now a legally registered UK charity.

Superficial Siderosis Support Network

These Facebook groups are private, so you’ll need to submit a join request. 

One Comment

  1. Maggie MacCallum-Dittmeier

    I’m not on Facebook, my intention is to shout it from the rooftops. This needs to be out there, too many people haven’t the slightest knowledge of what I’m talking about. From my hearing aid person to pain injection Doctor, but I am informing them.

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