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Retinitis Pigmentosa

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November 29th, 2013, 10:52 AM
Join Date: Nov 2013
Posts: 2
IS anyone here dealing with RP 2 of my babies have just been diagnosed and tested for this awful disease. I still have 2 more kids to get tested for it so im scared out of my mind. Please tell me im not alone as I feel in this battle.
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December 6th, 2013, 09:51 PM
Join Date: Oct 2008
Posts: 4

Sorry for the delayed response and thank you for responding to my previous post. My 6 and 8 year old were finally diagnosed with RP on November 13th of this year. It was a long and heartbreaking awful process. They had an ERG, a Goldmann visual field, an OCT and fundus photos at the Casey Eye in Portland. It was bad news after bad news until the final diagnosis. I know how you feel. I have no other children and there is zero history of blindness in my family or their dad's family so this came as a complete shock and I still find myself in disbelief some days, but I have decided to open my eyes to all kind of medicine. Western medicine doesn't have anything to offer at the present moment after all. I have changed my guy's diet to mostly raw fruits and veggies, purchased a microstim machine, began giving them some supplements (you should look up TUDCA among lutein and a few others) and they just had their first acupuncture session last Tuesday. I am NOT giving up. I understand and know that there is no cure and there are no guaranteed results, but I am determined to do everything possible to preserve the vision they have. The worst that can happen is that all I'm doing doesn't work, but I'd rather do everything possible than nothing. I have also read that it is extremely important to protect the eyes from harmful UV rays so I purchased polarized prescription glasses and make them wear them when they're outside (even on cloudy days) and have set up a plan so it gets done at school when they go to recess. We are fortunate to have great insurance that has covered everything including the acupuncture and chinese/naturopath doctor. I am by no means an expert but I am doing everything in my power as a mom to help my sons. Feel free to message me if you have questions. We can support each other in this. Also, science is really making progress, there IS reason for hope! and if we can get this to slow down until a cure or treatment is found, well.. that would be great
What kind of RP do your kids have? In our case, doctors think that it is X linked, but we won't know for sure until we get the genetic testing results back in a couple of months.
Hang in there. I get the feeling that I sound strong but I'm not.. I have plenty of tearful sad moments. This sucks.. I know how you feel. ((hugs))
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