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• anyone in iowa rp
• Posted: 2008-03-30 13:35:42 By jana p
• anyone out there with rp in iowa have 5 year old with rp. thanks janap

• Re: anyone in iowa rp
• Posted: 2008-03-31 10:23:01 By Katie V
• Hello there
  
  I live in Ontario Canada LOL which is obviously not Iowa.
  
  I am sorry that your 5 year old has RP. When was he or she diagnosed? My just turned 13 year old daughter has RP. We found out when she was 10. It is tough.
  
  Katie

• Re: Re: anyone in iowa rp
• Posted: 2008-03-31 19:36:08 By jana p
• we found out in nov. 07 but thats was after alot of fighting with eye drs. that something is wrong, he has had glasses since 2yrs old. Ive been fighting for him until we went to ia city and we had 2 drs. say its RP. At least i dont feel like people think im crazy know. janap

• Re: Re: Re: anyone in iowa rp
• Posted: 2008-03-31 20:20:11 By Katie V
• Sorry you had to fight so hard to get the right diagnosis that is tough
  
  In case you are interested I have started a private but busy group called Parents of Children with RP. The only reason why it is private is because we talk so openly about our children and lives. We are always looking for new members to join.This site has been fantastic in supporting the group.If you would like to join I need your email address
  
  Katie mom of Meghan 13 with rp

• Re: anyone in iowa rp
• Posted: 2008-04-18 11:18:13 By Elizabeth M
• I live in Des Moines. I was dx at 18 y/o...now I'm 41. My mom, uncle, cousins have RP. My adult kids do not have RP...though we are seen at U of I by Dr. Stone (he's great!) Have been thinking lately of trying to organize a support system. Are you close to Des Moines?

• Re: Re: anyone in iowa rp
• Posted: 2008-04-18 22:15:41 By jana p
• we live about 2 hours from desmoines going east. that is really great you replied to my message. we will have to keep in touch. kole goes back to the dr. in may to see if things have changed. janap

• Re: Re: Re: anyone in iowa rp
• Posted: 2008-05-01 15:12:13 By Holly L
• Hi! My name is Holly and i have RP, live in Iowa and have a 4 year old son with RP. we live between cedar rapids and waterloo. we also see dr. stone in iowa city. He is a great doctor for us! Feel free to contact me with questions anytime!