Blind and Visually Impaired Community
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Should I be upset about receiving Stargardts diagnosis via email? (self.Blind)
submitted by sawnny
I found out back in November by being copied into an email addressed to my local GP, in the time since I haven't heard a word from the specialist. In this letter, he said he'd see me in 3 months, however there has been no follow up since. Am I being over dramatic? Or is telling someone they have a rare genetic eye disorder that'll send them blind more of a face to face conversation? Or at the very least more than "the patient has these proteins and so I diagnose stargardts" addressed to someone else.
Sorry for the rant, but let me know what you lots think.
Sorry for the rant, but let me know what you lots think.
FaerilyRowanwind 9 points 2y ago
You are a person and should be spoken to like one. This is some important information that someone needs to sit down explain and grieve with you. That said. This condition has the ability to stabilize. So you may not lose all of your vision
sawnny [OP] 2 points 2y ago
Thank you for your response it is very lovely. Yeah fingers crossed, currently I'm still 20/20, but I've noticed a change.
FaerilyRowanwind 2 points 2y ago
It may be beneficial to get a second opinion but also to start learning some tech how old are you
sawnny [OP] 1 points 2y ago
They tested my genes and it came back with the mutations.
I'm 23, 20/20 vision.
I'm 23, 20/20 vision.
FaerilyRowanwind 2 points 2y ago
Hmmm. Interesting. Sorry. I specifically teach visually impaired and blind students and I have one who is 17 and was diagnosed with the same condition when she was 13. So you’ve caught yours a bit later. Right now she is stable and the longer you are stable the better. So. You may notice things but it may be supper slow progression wise and then just stop if that makes sense. If you are in the states than there are programs that help train you how to do things. Like use software and tech to work computers. But also safe cooking practices and other life skills that you may wanna check out. If you need a friend to just talk to or rant I’m more than willing to be that friend. Feel free to dm me.
viciousSnowFlake 1 points 2y ago
I'm 29 and only received my diagnosis last summer. My sister is 30 and got hers when she was around your age. She recently stopped driving. I'm ok other than being unable to read with my right eye and things seem to have stabilized for me.
Let me know if you have questions or need someone to vent to. What the specialist did is bullshit. I'd find a new one if possible.
Let me know if you have questions or need someone to vent to. What the specialist did is bullshit. I'd find a new one if possible.
niamhweking 3 points 2y ago
Yep I think a 1-1 would have been better and more professional. A couple of years back I was getting my VI child tested for and assessment of need as part of her diagnosis. I remember walking in and the psychologist handed me a form with aspergers diagnosis test written across the top. What a shocker. Now I had my suspicions but I'd imagine another parent could have been devastated being handed it without even the hint of autism diagnosis being mentioned
sawnny [OP] 1 points 2y ago
Yeah that sounds about right haha. Luckily I'd figured out what i had the same day I saw the optometrists pictures of my eyes (only one thing leaves those lil yellow marks) but I never mentioned that to them. So as far as they know, I knew nothing until the email.
siriuslylupin6 2 points 2y ago
Certainlhy seems like they could be more professional for sure.
TheBlindCreative 1 points 2y ago
Your doctor should have at least called you or scheduled a telehealth meeting. Explaining your diagnosis over email is just cold.
sawnny [OP] 1 points 2y ago
Ha, nothing explains in the call. Just the words stargardts. I'd of needed to Google it to find out if I hadn't already looked into that.
IronDominion 1 points 2y ago
That is definitely some very insensitive of not illegal medical practice right there. The specialist, or at least one of their staff should have discussed with you this information, if not in person on the phone
sawnny [OP] 2 points 2y ago
Yeah that was my thoughts haha.
Winnmark 1 points 2y ago
I don't necessarily think you're wrong, but I wonder if coronavirus had something to do with this?
even if you can't meet in person because of coronavirus, would a phone call be that difficult to place over an email?
obviously I just have an outsider's point of view, but it kind of sounds like your doctor dropped the ball on this one...
even if you can't meet in person because of coronavirus, would a phone call be that difficult to place over an email?
obviously I just have an outsider's point of view, but it kind of sounds like your doctor dropped the ball on this one...
sawnny [OP] 1 points 2y ago
I live in New Zealand haha, face to face is standard here. I'm sure its slowed things down, but a phone call or face to face shpuld of been do-able
Winnmark 2 points 2y ago
Oh, well if you're in New Zealand then hell yeah: you're right.
[deleted] 1 points 2y ago
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