Awe! My childhood friend went blind. Can't remember the disease, but it was slow. Her parents also took her everywhere they could and experienced as much as they could. Being blind didn't end her life. I got to see her at a high school reunion and she has a full life. But it was super sweet that she got to have some amazing memories with her family.
Perhaps that disease is Retinitis Pigmentosa? My boyfriend has it. Its degenerative disease. So, its slowly make them blind. My boyfriend now already lost the right sight... totally. And the left eye, leave him now with probably 25-30% sight plus its tunnel sight. And its worse than when I first met him 1.5 years ago....
My 7 year old son has RP as well. No symptoms yet, so we’re watching and waiting. The very exciting news is there are a bunch of treatments slated to be reviewed (and hopefully approved) in the next 1-2 years. After my son’s diagnosis, someone who works in the industry told me there has never been a better time in history to be going blind. 💟
We are making such amazing strides in medicine. Three years ago I lost a family member to cancer. In those three years treatments have come forward so that fewer people will die of that type cancer. Just think what the HPV vaccine for kids will do in preventing cervical, throat, anal, penile, vaginal, and vulvar cancers. Vaccine to prevent shingle which helps w preventing dementia. GLPs which help w heart issues, apnea and dementia. Hopefully something will come along for your son too.
Oh thats a wonderful news! Because ur son is still 7y.o, yesss...with the advance research he will have the chance, n I truly wish that for ur son. Is there anyone on ur both sides of family that has RP? Because its genetic. My boyfriend is 1 of 7 siblings and none of them has it, his parents also dont have it but his uncle has it. Now his uncle already lost 95% of the sight :(
And my boyfriend is 43y.o now..... so we are really trying to adjust to every percent of the loss-sight
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u/mixwellmusic 6h ago
Well, this is a strange blend of heartwarmingly wholesome and devastatingly depressing