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• recently diagnosed
• Posted: 2012-04-04 10:54:23 By Jennifer P
• In late January I was diagnosed with RP at a routine eye exam. After a 4 year delay of being there I decided to go for new glasses. I am 32 years old, and currently have no vision loss that I can tell. When doctors ask "can you see the stars or can you see in the movie theater?" my answer is "yes." The doctors feel that it is an autosomal dominant but that is just an educated guess, I have not looked into getting genotyped and I am not sure how to go about that process.
  I am very fortunate that I have no vision loss so far. I am also very lucky because I am a researcher at Penn. I work in the gene therapy field. I was able to speak with Jean Bennett, and her husband, Dr. Maguire is my retina specialist.
  I am also a mother and the only one in my family diagnosed with this disease. In that aspect I feel very alone. If there is anyone out there who would like to share their story with me or would like to talk please email me at jellmer@gmail.com

• rp-friends
• Posted: 2012-04-05 14:03:12 By Anna N
• Hi Jennifer,
  
  Check out RP-Friends (google it). Most of the RPers communicate there.
  
  I STRONGLY SUGGEST that you create a new and separate email address just for the rp-friends list.
  
  They generate a lot of email. This way you can tune them in or out at will.
  
  Anna Marie