Blind and Visually Impaired Community
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Had a new diagnosis of senior Loken Syndrome (self.Blind)
submitted by autistictechgirl1990
All my life I have had a diagnosis of Lebers Amaurosis but over the past year they have picked up on kidney problems and I have had a phone appointment and a face-to-face appointment with the genetics team. It will also explain the autistic traits as I read that it can cause intellectual issues and the doctor said that there is often a slight difference in the brain.
My question is, does anybody else have this syndrome as I heard it is extremely rare and can give me some advice for example, I am extremely anxious as my kidney function is below 20% I am on medication for blood pressure, but I am really worried as they said that I will need a transplant likely in a few years. And I will likely need dialysis, which I am terrified of as I don’t know what exactly it involves. And I’ve heard about organs being rejected and I’m scared that it will happen 
The doctor said that that with the syndrome being dgenetic the new kidney will work fine and it won’t affect the new one  but now I’m really worried that my other organs will start to feel as when I read up on the syndrome it said that it can sometimes affect other organs it’s just getting me down the fact that everything is going wrong
My question is, does anybody else have this syndrome as I heard it is extremely rare and can give me some advice for example, I am extremely anxious as my kidney function is below 20% I am on medication for blood pressure, but I am really worried as they said that I will need a transplant likely in a few years. And I will likely need dialysis, which I am terrified of as I don’t know what exactly it involves. And I’ve heard about organs being rejected and I’m scared that it will happen 
The doctor said that that with the syndrome being dgenetic the new kidney will work fine and it won’t affect the new one  but now I’m really worried that my other organs will start to feel as when I read up on the syndrome it said that it can sometimes affect other organs it’s just getting me down the fact that everything is going wrong
blind_cowboy 2 points 3y ago
There are 3 of us. It happens to most people as a teen but my kidneys gave up the ghost at 31. My first transplant came from a cousin, a living donor, but I unfortunately lost it to a virus. I received my second kidney in October 2018. If your in the US I can give you all of the information you want and then some about the waiting list, transplants, etc.
autistictechgirl1990 [OP] 1 points 3y ago
Hi I am in the UK so it’s the NHS
blind_cowboy 1 points 3y ago
In that case I obviously can’t help much with waiting list info. I can however give you all of the numbers and stats about transplants you would ever want to know. I am strange though the most comforting thing for me was to do as much research as possible and memorize as many stats as possible.
To what I said earlier though if you can find a living donor do it. That will save you from all of the beating on your body dialysis does.
Sorry I had a late night, am not awake yet, and I’m rambling. If there are any questions I can answer ask away.
To what I said earlier though if you can find a living donor do it. That will save you from all of the beating on your body dialysis does.
Sorry I had a late night, am not awake yet, and I’m rambling. If there are any questions I can answer ask away.
samarositz 1 points 3y ago
Wow, I have LCA and haven't heard of this before. Anything I should know to look out for?
autistictechgirl1990 [OP] 1 points 3y ago
I would keep an eye on your blood pressure because that is how they found out what was going on with me because my blood pressure was 180/206. Do you get migraines? I had been getting them for years before they did something about my blood pressure.
I also spoke to the genetics doctors but I don’t think you can refer yourself or maybe if you speak to your GP about wanting to know if you have it, they might be able to send you for the tests
I also spoke to the genetics doctors but I don’t think you can refer yourself or maybe if you speak to your GP about wanting to know if you have it, they might be able to send you for the tests
Hellsacomin94 1 points 3y ago
Hi!
Looks like we’re the only two Loken Senior people on Reddit. Are you in the US?
I was on hemodialysis for a year, slowly rejected that kidney and received a second transplant five years ago, which is doing fine. If I had to do dialysis again I’d go with home hemodialysis, but over all my advice would be to avoid if ilf you can and go straight to transplant, it’s much better. Transplant waitlists can be long, try to get evaluated as soon as you can, it will take several months to be accepted and several years on the waitlist to get a kidney. You want to start racking up time as soon as you can, even if you don’t feel sick, so that when you start showing symptoms you don’t have to suffer as long.
How is you vision? It’s funny to me, I was always told I had RP, but apparently I have LCA.
Give me a PM if you want to talk more.
Looks like we’re the only two Loken Senior people on Reddit. Are you in the US?
I was on hemodialysis for a year, slowly rejected that kidney and received a second transplant five years ago, which is doing fine. If I had to do dialysis again I’d go with home hemodialysis, but over all my advice would be to avoid if ilf you can and go straight to transplant, it’s much better. Transplant waitlists can be long, try to get evaluated as soon as you can, it will take several months to be accepted and several years on the waitlist to get a kidney. You want to start racking up time as soon as you can, even if you don’t feel sick, so that when you start showing symptoms you don’t have to suffer as long.
How is you vision? It’s funny to me, I was always told I had RP, but apparently I have LCA.
Give me a PM if you want to talk more.
autistictechgirl1990 [OP] 1 points 3y ago
I sent you a private message. Forgot to say in the message, I have a bit of site like I can see colours and shapes depending on the light but can’t see details. What about you
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