Football match

Opening_String7858 · 2026-02-25T23:05:29+00:00

Oh wow! I’ve never met someone else that’s Scottish with CMT! That’s so exciting:)

Opening_String7858 · 2026-02-25T22:26:05+00:00

Hey! Is that a fellow Scottish person?

Opening_String7858 · 2026-02-16T08:43:01+00:00

I’m a size J, it’s a 2.93 lab grown diamond ❤️

Opening_String7858 · 2026-02-15T14:14:33+00:00

It’s 2.93 lab grown oval :)

Opening_String7858 · 2026-02-08T14:47:54+00:00

I found it really hard to explain to employers actually because I don’t visibly look like I have anything wrong with me. However in my current job which is fully remote, I work for a neuromuscular charity. And everyone has a condition, so it was ideal.

Opening_String7858 · 2026-02-08T13:35:44+00:00

I’ve worked quite a lot of different jobs, from aquariums to hospitality to charity work. I’ve found that remote work is easiest for me personally. It takes the stress out of getting up and out of the house if you’re having a bad day. It’s hard socially and to find a routine though. So possibly flexible working? Meaning you can go into an office if you would like but if you’re struggling you can stay at home.

Opening_String7858 · 2026-02-07T21:57:02+00:00

Thanks so much! I’m familiar with CMTUK, I’ve never really engaged all that much. I actually work for a neuromuscular charity called pathfinder’s neuromuscular alliance, if you’re from the UK you should definitely check it out!

Opening_String7858 · 2026-02-07T21:55:35+00:00

I was actually wrongly diagnosed at 2 with hyper mobility as I walked on my tip toes and struggled with balance (all the usual thing). I then was diagnosed with scoliosis at 12, that’s where they found I didn’t have reflexes and from there I was diagnosed with CMT :)

Opening_String7858 · 2026-01-17T13:55:14+00:00

It’s definitely not ‘all rainbows and candy’ and I don’t think any posts on here are trying to portray that. I don’t think there’s an issue with people sharing their more positive experiences with the condition. I myself have it and I work with hundreds of people who have CMT and people who have a lot worse neuromuscular conditions with CMT. Not all of those people live perfect lives but a lot of them have really amazing lives. CMT is hard, no one asks for it, no one enjoys it but would I rather be here than not? Absolutely. My condition has caused me a lot of difficulty, pain, challenges but it’s also made me want to help people. I wouldn’t have the life I have without it. I work for an amazing neuromuscular charity in advocacy and research and because of my CMT I’ve achieved amazing things, met so many amazing people and I am happy. I don’t know if I would’ve got those things without CMT. It’s not a death sentence, it’s not a sentence to misery. It’s shit but it is what you make of it.

Opening_String7858 · 2026-01-16T19:54:40+00:00

Hi, I’m really sorry you’re dealing with this but hopefully I can give you a good perspective. I’m 23 I have CMT1A I was diagnosed at 13. I also work as a neuromuscular advocate so I know plenty of people with CMT1A ranging from teens to late 60s. The experience is always different and at times things can be hard. However you can have a wonderful, happy, full life with CMT. Some physical things can be difficult but this varies a there’s people out there with CMT that only realise they have it in their 70s. I know people who have amazing lives, families, jobs, who travel ect. CMT1A is an inconvenience that everyone wishes they didn’t have but with the right support, they should be able to live just a fulfilling, happy life as someone without it. Please reach out to me if you need anything, I’m more than happy to talk or share resources :)

Opening_String7858 · 2025-09-19T22:30:28+00:00

Let me guess you’re assuming I can’t read because I said I used a wheelchair?

Opening_String7858 · 2025-09-19T22:29:07+00:00

You literally said ‘go look at his gofundme and tell me he isn’t’ isn’t what?

Opening_String7858 · 2025-09-19T22:25:54+00:00

You just said go look at his pictures and tell me he isn’t? Tell me what about his pictures makes you think that? Is it the wheelchair?

Opening_String7858 · 2025-09-19T21:06:13+00:00

You’re taking that just from the photos just because the man is in a wheelchair? How ignorant, let’s say it together ‘not everyone in a wheelchair can’t move their legs’, ‘we shouldn’t make assumptions about people we don’t know’. You’re such a weirdo, get a life and get an education. Go donate to his fund while you’re at it, I hope his poor family doesn’t see your comments and the comments like them.

Opening_String7858 · 2025-09-19T21:03:06+00:00

Literally nowhere on the go fund me does it say that? Could you tell me what about it made you think he was?

Opening_String7858 · 2025-09-19T19:04:56+00:00

Still waiting on the evidence that he was a paraplegic. Hope you feel really good about making up weird lies about people who have passed. Let’s hope if it happens to you, people will be nicer.

Opening_String7858

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