My daughter is 13yo with IP. I am wondering how long we should be watchful of eye problems developing due to IP. She has gotten yearly eye exams from a regular eye doctor. She wears contacts and just went up 2 prescriptions in her left eye. I thought that by being 13yo and just having mild symptoms, that she would be safe of developing anything else related to IP. She has the typical skin hypo pigmentation streaks, frizzy patches of hair and 12 adult teeth missing.
I have almost the same question, my daughter (12 month old) had her eyes lasered last week. My question is, is it likely for the eye to have problems again or did the laser fixed all the problems. I will be seeing her eye doctor next week and i will ask him but has anyone experienced any eye laser?
I'm guessing the answer is never... I think you always have to keep an eye out for it, but probably just regular eye exams are enough if you don't have problems. I have IP and I've worn glasses & contacts since I was about 13, but not had any other problems, until just now at my last appointment - my dr said one of my eyes is showing some signs of macular degeneration. I'm now 28.
I'm 31 from Sydney Australia and have majority of the IP symptoms. I have peg like teeth on the top - all baby teeth and only grew 3 bottom teeth on the lower. I have had extensive dental work from dentures and now to full lower implants and upper veneers. I also have a lot of scaring from lesions and rashes on the backs of my legs, hands and face however, all very faint, fake tan helps my skin look more even. Up until today I had partial blindness in my left eye due to my optic nerve not developing properly. The eye has always been alittle lazy and I need glasses to read from my 'good eye'.
2 months ago I started to get a flashing sensation in my left eye which I initially ignored and later had checked, I was immediately sent to hospital for a retina detachment. The doctors did research on my condition purely based on the optic nerve side of things and then realised the detachment was related to IP. I have just undergone three surgeries as my retina continued to detach and in the last surgery, I had such an aggressive scaring response in the eye due to the IP that the scaring pulled the whole retina off and essentially crumpled it causing permanent blindness in my left eye with possible complications down the track.
I'm left feeling confused as its a wait and see to how the eye reacts in taking its natural course either to shrink or die. I am wishing I had done more research on IP as I was not aware of retinal detachment being common particularly having got through 31 years. My advice is to have regular eye checks and be well aware of retina detachment/tear symptoms - i.e.flashing, floaters, rippling effect - go straight to emergency as the retina can attach within hours. Due to preexisting scaring, they feel my retina tearing occurred over weeks and that the scaring may have been holding the retina down
I am happy to speak further about this if anyone is interested?,
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