thisworldcanbeaccessible

[WhatABore]

I will say that on Natalie's tiktok, she says that neither her mum or dad have huntingtons but you can also just be a carrier.
There are 3 different, I guess diagnosis'
1. being have it yourself and can pass it on.
2. having the gene and can pass it on but not develop it yourself.
And I can't remember the 3rd.

So there is a chance her parents don't have it. May never have been tested because they have the gene and have not developed anything.

 

[Deeznutslol]

I will say that on Natalie's tiktok, she says that neither her mum or dad have huntingtons but you can also just be a carrier.
There are 3 different, I guess diagnosis'
1. being have it yourself and can pass it on.
2. having the gene and can pass it on but not develop it yourself.
And I can't remember the 3rd.

So there is a chance her parents don't have it. May never have been tested because they have the gene and have not developed anything.

3rd is a spontaneous mutation, but that’s v rare. It’s autosomal dominant so the most likely scenario is inheriting it from a parent who is also affected by the disease, however I’ve read that it’s possible for one to inherit the gene and actually never develop symptoms, so I don’t think her parents not having Huntingtons can be taken as concrete evidence to prove she is lying about having it. Plus, there’s also the possibility of infidelity having occurred as well lol

 

[WhatABore]

3rd is a spontaneous mutation, but that’s v rare. It’s autosomal dominant so the most likely scenario is inheriting it from a parent who is also affected by the disease, however I’ve read that it’s possible for one to inherit the gene and actually never develop symptoms, so I don’t think her parents not having Huntingtons can be taken as concrete evidence to prove she is lying about having it. Plus, there’s also the possibility of infidelity having occurred as well lol

Yes, exactly.
This is the diagnosis my Sister in laws siblings got.
They carry the gene so can pass it on themselves however they will never develop it themselves.

I couldn't remember the 3rd I was going to say something along the lines of not knowing if you'll develop it or not. But I wasn't 100% sure on that.

Basically what I was trying to say was her parents not having it doesn't really mean anything

 

[Deeznutslol]

Yes, exactly.
This is the diagnosis my Sister in laws siblings got.
They carry the gene so can pass it on themselves however they will never develop it themselves.

I couldn't remember the 3rd I was going to say something along the lines of not knowing if you'll develop it or not. But I wasn't 100% sure on that.

Basically what I was trying to say was her parents not having it doesn't really mean anything

There’s no way they’d have been told they were only carriers tho? It’s autosomal dominant meaning if you carry the gene by far the most likely scenario is that you develop symptoms.

 

[duggee_hug]

Basically what I was trying to say was her parents not having it doesn't really mean anything

Correct me if I’m wrong but I thought she said she inherited Huntingtons from one of her parents?

Unsuprisingly there are people not agreeing with New Found Sara, and she’s trying to argue with them instead talking like an adult. Shutting down any comment that says she could be wrong, there is no room for discussion with that woman, it’s her way or the highway. For example apparently the reason why people haven’t got their items is because it’s a ‘4-6 week delivery’ however delivery timescales aren’t mentioned on the 1820things website except to say shipping is ‘as soon as possible.’ ‍

 

[LunaAzul]

The comments on that New Forest Sara video. Basically saying they’d rather be proved wrong but have been kind

 

[Squittel]

Probably crucial to note that HD cannot skip a generation.

It is possible to carry it and not develop it. E.g. if your father is carrier but dies of something else before developing it, but if your parent is a carrier you have a 50% chance of also being a carrier. However if a grandparent had it but did not pass it on to your parent you cannot be a carrier. (Unless you have the extremely extremely rare version which appears spontaneously)

3rd is a spontaneous mutation, but that’s v rare. It’s autosomal dominant so the most likely scenario is inheriting it from a parent who is also affected by the disease, however I’ve read that it’s possible for one to inherit the gene and actually never develop symptoms, so I don’t think her parents not having Huntingtons can be taken as concrete evidence to prove she is lying about having it. Plus, there’s also the possibility of infidelity having occurred as well lol

While not concrete proof (and I said I’d stop speculating but I’m still doing it ) there would likely be some family history SOMEWHERE.

 

[WhatABore]

Correct me if I’m wrong but I thought she said she inherited Huntingtons from one of her parents?

Unsuprisingly there are people not agreeing with New Found Sara, and she’s trying to argue with them instead talking like an adult. Shutting down any comment that says she could be wrong, there is no room for discussion with that woman, it’s her way or the highway. For example apparently the reason why people haven’t got their items is because it’s a ‘4-6 week delivery’ however delivery timescales aren’t mentioned on the 1820things website except to say shipping is ‘as soon as possible.’ ‍

She will have, if she has it. As they may carry the gene.
As far as I'm aware, it's very very rare to get huntingtons when neither parent carries the gene.
But that parent may never develop symptoms. Only carry the gene.

There’s no way they’d have been told they were only carriers tho? It’s autosomal dominant meaning if you carry the gene by far the most likely scenario is that you develop symptoms.

I'm literally going off what my sister in law and her family have been told.

They have the certain type in their genes (27 to 35 CAG repeats, according to Google)
Which means they won't develop symptoms.

 

[duggee_hug]

The comments on that New Forest Sara video. Basically saying they’d rather be proved wrong but have been kind

Most of them aren’t being particularly kind themselves when they’re being argumentative in the comments to those on the opposite side of the fence.

Anyone who is questioning Carrie/Samantha are wrong, those who say they know her or have experience with this terminal illness need to provide proof or they’re liars (yet Carrantha’s shown zero proof of anything she’s said, but that’s ok).

As it stands, if they’re right they’re right. And if they’re wrong they’re right - can’t win!!!!!

 

[WhatABore]

Most of them aren’t being particularly kind themselves when they’re being argumentative in the comments to those on the opposite side of the fence.

Anyone who is questioning Carrie/Samantha are wrong, those who say they know her or have experience with this terminal illness need to provide proof or they’re liars (yet Carrantha’s shown zero proof of anything she’s said, but that’s ok).

As it stands, if they’re right they’re right. And if they’re wrong they’re right - can’t win!!!!!

I got a horrible comment back on tiktok when I replied to a comment about Samantha showing up on Ansestery and no Carrie.

"Maybe you should consider if your life is valuable enough to be on this planet if you're questioning what a disabled person has said, because I'd say it's not"

It's okay for them to be horrible to everyone else but doubting a possible fraudster is wrong just because she's disabled

 

[LunaAzul]

I got a horrible comment back on tiktok when I replied to a comment about Samantha showing up on Ansestery and no Carrie.

"Maybe you should consider if your life is valuable enough to be on this planet if you're questioning what a disabled person has said, because I'd say it's not"

It's okay for them to be horrible to everyone else but doubting a possible fraudster is wrong

Wow. That’s awful!!

 

[Squittel]

I think what the new forest Sara crew are forgetting is that a lot of those who have potentially lost money are either disabled or carers. This woman was promising not just a couple of sensory bits, she was promising to deck out entire rooms with this equipment. Some of them have spent a lot of money because they saw it as a really good deal and were able to support another disabled person in the process. Of course they can “just contact their banks” but they will still be out of pocket in the short term and incredibly stressed about it. Some people aren’t able to just go “oh it’s just a couple of hundred quid” because they are living on disability allowance.

And just maybe she’ll still come through and that would be amazing, but regardless of whether or not she is disabled, the people she is causing upset to is OTHER DISABLED PEOPLE ffs.

 

[duggee_hug]

I got a horrible comment back on tiktok when I replied to a comment about Samantha showing up on Ansestery and no Carrie.

"Maybe you should consider if your life is valuable enough to be on this planet if you're questioning what a disabled person has said, because I'd say it's not"

It's okay for them to be horrible to everyone else but doubting a possible fraudster is wrong

That is so awful!

It blows my mind how horrible they are to those who are genuinely questioning this situation. Look at this, honestly Sara’s replies are so aggressive. How can she say she’s being kind?! She’s being snarky and dismissive.

 

[Squittel]

That is so awful!

It blows my mind how horrible they are to those who are genuinely questioning this situation. Look at this, honestly Sara’s replies are so aggressive. How can she say she’s being kind?! She’s being snarky and dismissive.

Those replies are awful. Supporting one [allegedly] disabled person at the expense of all the other disabled voices.

 

[Charliemight]

I’ve been through the testing of HD and even had family tested in the same hospital she has been tested and the video she says she as told she has it you have 5 years and make a bucket list is all bull she also said she got it from her dad!

 

[WhatABore]

I’ve been through the testing of HD and even had family tested in the same hospital she has been tested and the video she says she as told she has it you have 5 years and make a bucket list is all bull she also said she got it from her dad!

This is what I commented on before.
The average life span after first symptoms is 20 years.
It can be much more.
There are rare occasions it's less.
But there is no way at all they'd be able to tell her how long she has left.
She is at most, in stage 3 but I'd say stage 2 is more likely based on how she speaks ect.
These are still quite early stages.
The final stage, stage 5 being end of life care which is usually a couple of years just for that 1 stage.
Again, obviously some people may have a lot shorter life span. Some people may have a lot longer.
But there is no way at all, even if she were in stage 4 or 5 (which she isn't) that they'd be able to tell her how long she has left.
Because it varies so much!

My sister in laws parent is in end of life care as I stated before, it's taken them 22 years to get to this point. And they've been in end of life care for 2 years now.

There is no way any credible doctor would not only estimate but also tell her how long she has left.

 

[duggee_hug]

I’ve been through the testing of HD and even had family tested in the same hospital she has been tested and the video she says she as told she has it you have 5 years and make a bucket list is all bull she also said she got it from her dad!

Not only has she been told to make a bucket list, her therapist has also advised her to bury old ipads in a mock type funeral to help her godchildren understand death?! https://atomicmommy.net/2021/12/14/will-there-be-a-phone-in-heaven/

 

[AsHagrid]

Haven't been able to keep up with everything, but was that journalist able to release her article on Carrie?

Also, does Maz rub anyone else the wrong way?

 

[Squittel]

This persons comments sums up the orders situation fairly well.

 

[Ruth1983]

So what was the update on the welfare check?