I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some involuntary movement.
The MRI did not look right to the neurosurgeon that looked at the image but he did not have any reason to be completely alarmed as she had no symptoms and the area he was looking at was an area he did not feel he could do much to improve anyway. We made a few more visits at 6-month intervals and did nothing but watch.
Deciding to Start a Charity is a Tough Decision
As a few more years passed we noticed some slight hearing loss ( from school tests) and at that time we got the diagnosis of Superficial Siderosis when we discussed it with our neurosurgeon. From that point on the research began and was the beginning of the Superficial Siderosis Research Alliance (SSRA) that was recently created.
That’s was back near 2012 and we are almost to 2020 right now so …… continue reading