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• Info on Dr's
• Posted: 2011-02-19 11:02:08 By Brice F
• Just ran across this forum looking for some first hand accounts of life with SD.
  
  I'm 26 years old and was just diagnosed with what is believed to be SD. My retinal specialist has referred me to the University of Michigan's Kellogg Eye Center to see a genetic retinal specialist. I was wondering if anyone has been there for treatment/diagnosis/2nd opinion anything and what their thoughts were.
  
  I was devistated to found out that I had this disease. My wife has been awesome to say the least. As of now my vision is still 20/25 (apparently 20/40 in my right eye alone). The most noticable times I have difficulties are at night (especially driving) and lower light situations.
  
  My biggest worry at this point is for my two children. We began having kids before this diagnosis and they are now 2 and 2 months. My wife was pregnant when I was diagnosied.
  
  Thanks in advance for you replies and perspective!

• Posted: 2011-03-22 14:25:04 By Caleb N
• Brice,
  My name is Heather Neufeld and I have a 13 year old son who has Stargardt Disease. He was diagnosed when he was 9. He experienced a rapid decrease in vision over the first year or so. He is now "legally blind" with vision at 200/400. This sounds devastating but I want to encourage you. My son leads an incredibly normal life. I've been told that if you have to be blind, this is the way to do it. He still has and will always have periphial vision. He doesn't bump into things or need a cane to walk. He has trouble reading small print and uses a CCTV to do his math. When he reads a book (which he does A LOT) he holds it up close to his face and does fine. It's hard for other people to watch but it doesn't bother him at all. I know it will hit home for him soon when his friends start to drive and he can't. That will be very difficult. We have 4 children who could all have the disease but so far they are not showing signs. That thought haunts me too. It brings me to tears more often than I'd like to admit. We find strength in our faith in God and His perfect plan for all of our children. Would we have changed our minds and not had them knowing this? ABSOLUTELY NOT! They will have wonderful, fulfilling lives with or without this disease. Life is a precious gift and those who struggle with issues like this sometimes learn to appreciate it more than those of us who don't. Another encouraging note is the magnificient progress being made toward finding a cure. The article on the home page right now about Oxford Biomedica's clinical trial starting this summer is blowing me away! We are so excited to see what might happen in the very near future! So hang in there. I was going to say I can't imagine what you are going through, but actually in many ways I can. It's okay to feel sad for a little while, just don't stay there. Tell yourself the truth. This is not going to ruin your life. There is hope! If you or your wife would like to talk more you can email me at khcn2@cox.net. I will be praying for you and your family.
  
  Heather Neufeld

• Posted: 2011-12-10 12:57:21 By Abbey D
• Hi im Abby Im 13 and I have had stargardts since I was 8. It isnt as horifying as people make it out to be. The only thing that bothers me is when people say things like look over there! or Whoa look at that!. But that is mostly it.
  
  ~Abby from Tx~
  God doesnt give us anything we cannot handle:)