Blind and Visually Impaired Community
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FEVR - anyone with details on this condition ? (self.Blind)
submitted by raspberrypiii
Hey all,
My niece has been diagnosed with FEVR couple of weeks ago. She is a 2 month old. Most of her retina is detached (left eye bottom side has some retina). Does anyone know about this condition and how it effects her for rest the her life ?
My niece has been diagnosed with FEVR couple of weeks ago. She is a 2 month old. Most of her retina is detached (left eye bottom side has some retina). Does anyone know about this condition and how it effects her for rest the her life ?
Anianna 5 points 3y ago
Symptoms can vary even within the same family, so it's nearly impossible to say in what way it will affect her. The condition deprives the eye of blood flow, which is what can cause a separation of the retina. Her doctors may want to watch her for reduced mineral density in her bones, which is another symptom that some people suffer, but like other symptoms, it can vary from person to person even in the same family, so it's not definite that she will or won't suffer that.
Whip-Ma-Whop-Ma-Gate 1 points 1y ago
Wondering if you have any updates on how she’s currently doing these days? My 4 month old son was just diagnosed with the same.
obex_1_kenobex 1 points 3y ago
Here is info from the American society of retina specialists https://www.asrs.org/patients/retinal-diseases/15/familial-exudative-vitreoretinopathy
Without examining your niece no one can tell you visual prognosis, however retinal detachment is generally an indication that the eye with the detachment may not see well in the future. Her retinal surgeon can give you more information about her specific prognosis and if surgery should be attempted or not.
Other family members should be examined by a retinal specialist, especially young kids as they may not report visual symptoms.
Without examining your niece no one can tell you visual prognosis, however retinal detachment is generally an indication that the eye with the detachment may not see well in the future. Her retinal surgeon can give you more information about her specific prognosis and if surgery should be attempted or not.
Other family members should be examined by a retinal specialist, especially young kids as they may not report visual symptoms.
raspberrypiii [OP] 1 points 3y ago
She was examined by retina specialist and had to go through and surgery already on her right eye.
razzretina 1 points 3y ago
What is FEVR an abbreviation for? I haven’t seen this abbreviation in retinal detachment disorder descriptions before.
raspberrypiii [OP] 3 points 3y ago
Familial exudative vitreoretinopathy
It is a genetic disorder.
It is a genetic disorder.
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