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• More active message boards?
• Posted: 2012-04-19 22:56:27 By Andrew G
• Is there a site out there where people with Stargardt's are more actively interacting with each other? I'm a male in my 20's and have Stargardt's and am finally wanting to get more in touch with others going through the same thing, but it seems like there is no active place online for t hat. these message boards are hardly used and facebook doesn't seem to be getting us together. does anyone know of a place or have ideas on how to fix this?

• Posted: 2012-05-03 11:28:10 By Abbey D
• Hey im 13 my name is abbey. I have stargardts too. this disease is so rare it is hard to find anyone with it. I have spent a year looking for people and found 2 but could not reach them...some people have websites and they have their emails there so you can contact them. Im sorry and I know what you mean I have 3 blogs 2 pages on acebook a twitter and a website and no one has contacted me im sorry:(

• Posted: 2012-07-17 20:29:14 By Helene S
• Hi Andrew,
  
  Regardless of the cause, the end result is the same for us as for many prople with central acuity defects: impaired vision of varying degrees. I think if you expand your search to reach out to the broader population of those with low vision/visual impairment/legal blindness, you'll have better results. I know of a site called stargardt (S?).net, which is a collection of personal stories submitted by readers, most of whom welcome communication with fellow patients. I also remember a group called "Council of Citizens with Low Vision"...the fact is, with no viable cure on the immediate horizon, your time and efforts are probably more practically spent on finding the best solutions (i.e., low vision aids) for your everyday frustrations while keeping up on the latest research.
  
  I think another reason that the community seems so underepresented is that most of us only turn to a support forum if we've hit a bump in the road attributable to our condition- if life is humming along, we- or I, anyway- place it on the back burner- although trust me, I never forget it's there.