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• Young Diagnosis
• Posted: 2008-01-20 01:02:36 By Christie L
• Last Wednseday I got the news that my 6 year old son has Choroideremia. Growing up I watched my father deal with this, he is the strongest man I know, him being diagnosed at the age of 13 by the age of 21 he lost he drivers licence 22 lost his job, thats when things got bad for him. At 42 years of age he had 4% vision left and he got his first seeing eye dog.(which he said gave him back his freedom and indapendence) In 2000 age 45 his sight was gone completly. On the other hand my uncle Doug was 45 when he lost his Licence. He now in his mid 50,s is experencing night blindness. So with me knowing some backround of this disease you would think I would have been ready for the diagnosis but to be honest NOTHING can prepare you for the words "Your son is going to be blind." I would like to hear others story's and how they are dealing with it..
  
  Christie

• Re: Young Diagnosis
• Posted: 2008-01-27 15:36:22 By terri h
• my son was 11 when we found out. he is now 17. the disease has not progressed but he had 2 laser sugeries when he was 11 to stop a bleeding vessel due to the disease. he has scar tissue that is making him lose his sight. his dr has said that there is nothing that can be done for the scar tissue, but i am desparately trying to find help. i am taking hin to duke university in march. they are suppose to be doing a lot of research.
  my father had this disease and it is the hardest thing i can imagine that my son could ever face. my prayer is that stem cells will become available for treatment. how old is your child? where are you located? do you know anything about treatments for the bleeding vessels? any info would be great.

• Posted: 2008-12-22 20:10:30 By Michael M
• not as a parent here but as a young man with choroideremia... im about to be 21 and am dealing with this constant battle of vision loss and being a college student. i dont know exactly when i was diagnosed, it was rather young though... i have very bad night vision, deteriorating peripheral vision, no center vision in my right eye, and things continue to get worse. anyway im just getting to the age where networking seems essential in fighting this blindness and staying strong... i dont have any parental advice for you but i have gone through my life this far fighting this... from being a kid and not being able to play flashlight tag to not being able to drive at night when i turned 16 to having to quit sports like ice hockey bc of my vision.... i guess im offering up personal experience to any questions you may have.....
  
  Mike McCarthy

• Posted: 2009-08-31 12:10:29 By Russell W
• HI
  
  Sorry to hear about your sons diagnosis but all is not lost and to be honest i dont even think about my disease anymore
  
  I turned 40 this year and only had to stop driving 3 years ago. It can be a bit if a nuisance and you do have to take precautions ie be aware of the times it gets dark ect but i still have more or less a normal life with around 15% of my vision left. I was 22 and serving in the air force when i was diagnosed when i was having real problems with my night vision. 8)