Thursday, March 7, 2013

March Update

Got over the Bump in the Road
If you follow this blog you might remember a previous post A Bump In The Road. At that time I had some difficulty with my health insurance and missed my 6-month follow-up visit with my ophthalmologist. well Tuesday I was able to finally go to my long awaited appointment. I can't give specific details on the exact change in my vision because I have to get the paperwork from my Doc. In April I'll do a side by side comparison between my first visit and this latest one.
What I have noticed is a slight decreased visual acuity in my eyes. I was able to read the first two rows of the eye chart. It was difficult to read the 3rd row though. I was surprised that my left eye is better than my right, I always thought it was the other way around. Also my doctor wrote me a referral to see in his words a "Super Specialist" so look out for future posts.

Another Way for the Stargardt's Community to Connect
Today I created two new communities on Google Plus. I have had the pleasure of meeting many fellow Stargardt's patients on Twitter and Facebook, but I know that everyone doesn't use those social networks. I noticed that Google+ didn't have a strong Stargardt's presence so I decided to create one. The community feature on the social network has its advantages over Twitter lists and Facebook groups. In communities you can better navigate through pasts discussions which eliminates redundant conversations. I made one group that is public so all posts can be searched on Google and I made a private companion support group for people who want to connect with other patients.
Since Stargardt's is a rare disease and patients are so widely spread around the world its vital for us to connect. The groups are open to everyone around the world and their families. 
They can be found here:
The public group - Stargardt's Disease Awareness 
The private group - Stargardt's Disease Support 

Before I go I have to give special thanks to Beth Omansky who is the admin of one of the two Stargardt's groups I'm in on Facebook Stargardt's Central. She created the group a year ago for people who were diagnosed who needed a private forum to get info and support with dealing with this disease. So that's what inspired me to make the Google Plus version so that more people out there can get support.


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