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Living with Superficial Siderosis
A blog chronicling our life after a diagnosis of Superficial Siderosis an..
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Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 2w ago
Most of us never give much thought to how our sense of smell influences our sense of taste. The pleasure from appreciating the dimensions ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 1M ago
We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019, at the Ingleside Hotel ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 1M ago
Some days are better than others but you really start to worry about the future when you hear the unmistakable sound of someone bouncing ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 1M ago
The eve of a new year is a time for reflection. When I look back on our lives at the end of 2009 I’m reminded of how carefree we felt. A ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 2M ago
When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 2M ago
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 2M ago

It was late 2014. Gary and I were waiting in his new ophthalmologists exam room when I wondered why is it so many of the superficial ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 2M ago

David M. Dickson Jr. has always enjoyed a zest for an active life. From neighborhood quarterback to surfing, fishing, weightlifting, and ..read more
Living with Superficial Siderosis by Living With Superficial Siderosis - 3M ago

Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early research papers we ..read more

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