Tamara's Experience of Living with Prader-Willi Syndrome - Consensus Gretton
HTML-код
- Опубликовано: 15 окт 2024
- Tamara, a 40 year old lady with Prader-Willi Syndrome (PWS) who lives at Gretton House, one of our specialist PWS residential services in Corby, was recently invited by Charity, Teamwork Trust to take part in their Co-Production Week, a national initiative where people share their lived experiences to help and benefit others.
Teamwork Trust is a charity that work with and support individuals with mental health needs, learning and physical disabilities and provide a range of enabling and education projects, activities and counselling programmes.
Tamara who attends Teamwork Trust once a week, was asked to share her story with her peers and staff to create better understanding of her condition and the challenges that people with PWS can face.
Tamara, who was almost 30 stone when she was diagnosed with PWS in her early twenties, told the group how a lack of understanding and mismanagement of her condition led to her extreme weight gain. “I grew up not knowing I had PWS and was bullied when I was at school for stealing from lunchboxes and skin picking, which is another symptom, because children didn’t understand that I couldn’t help it,” said Tamara.
Read more here: www.consensussupport.com/tamara-shares-her-inspiring-story-of-living-with-prader-willi-syndrome/
It's good to know that Tamara is still doing well. PWS sounds like a nightmare. I've been thinking about her a lot since I saw in a documentary many years ago.
This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
I had a friend who was 48 when he died from it in 2010
Cool to see an update on her, she seemed to really understand her disease and diagnosis, especially when Katie came for the one day trial and through a fit. Tamara had some real words of wisdom. Glad to see she has still maintained her weight, good for you Tamara keep it up!
Awesome to see Tamara again. I'm sad her original documentary has been pulled from RUclips as I often thought of her, how she rose above the adversity caused by her mother, and her sweet relationship with her partner (was it Martin? sorry, I've forgotten his name). I hope the documentary will turn up online again in future.
I agree out of nowhere I remembered Tamera, I wish they kept the original documentary up. I'm glad to know that she is doing well too.
It's because joe has died
This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
I loved the documentary as well, from a purely scientific perspective. I’d never sit and laugh all the way through.
It is still on RUclips
I love seeing an update on her. I’m glad she is doing well
This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
Wow! Tamara looks great! I am really glad that there is stuff for people with this condition! I will bee honest I didn't think things would be so well off from all the documentaries I have seen.
This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
@@cleopatralily5879 What does she mean by "this be control"?
I met Tamara a few years ago
A really nice woman
Good in you Tamara, educating people is so important. I’m sorry you’re having to deal with PW, life must be incredibly difficult 💜
You are an inspiration for those who are also living with PWS
Yes she isThis be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
@@cleopatralily5879 that is awesome and I hope that works well for! I pray there will one day be a cure for PWS
@@annetteslife why don't you contact him to know if there's,??
Glad to see an update on her, one of my favorite characters from the PWS universe.
Glad to see Tamara.But what's happened to her mouth and teeth?
She has a lot of extra saliva around her mouth, which causes dryness. I don’t know her personally but I have followed her story and she has had that since she was younger. I truly admire her strength and determination. She’s Amazing!
@@TickleMonster333 Yes, it does appear she has very dry lips but it seems as if something else is going on as well. Like she may be missing her bottom incisor teeth and her gums are uneven?? I loved watching her in the documentary years ago. I am glad to know she is doing relatively well.
This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
@@cleopatralily5879there’s no cure for PWS
Good work Tamara!
I remember this lady from the real lives documentary glad she is ok
I’ve seen a few videos of Tamara over the years on RUclips ( she is a true inspiration) but what’s going on with her lips & mouth ?
I wonder if she married that bloke she was with.
Yes she's but This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
I saw her on that other tv show. I didn't realize the show was so old.
Does it really matter how old she is ?
That other TV show was filmed back when she was still in her mid-twenties.
GIad to see Tamara is doing weII but i wonder too, what happened to joe?
He passed away last year sadly.
@@marielewis2803 did you know him personally or is this just an internet rumour sort of thing. Sorry to hear if he has passed away though I guess he'd have been in his 30s?
@@dominicaaaaa5547 Hi know I never new him at all but it's on his mum's Facebook page Donna Blackburn ok.
There is a photo of him on her page of him in hospital with family members before he passed away.
@@marielewis2803 really sorry to hear that. Could you link his mum's Facebook?
Wasn’t she roommates with Katie from the documentary
No Katie was only there for One day, Tamara was encouraging Katie to stay for longer because it would help her but Katie had a fit about it and cried to go home because she wasn’t eating enough food in the house.
Wonder what happened to Katie Williams and Rebecca Madley?
Not sure abt Rebecca, but I heard Katie died in 2022 sadly
She likes her treats ! Spicy bean burgers, fudge chocolate fudge cake !
PWS is a genetic disorder! Look it up instead of coming on here being a douche
She looks like herself from the documentary. Im really curious how Joe Blackburn is doing today
Died
@@SiestaYonJyuGo Damn wasn't expecting that. How do you know this?
@@TheRandomVaperhis mum posted on facebook
Dear Tamara. Higher Tamara. Tamara Your Your Condition PWS Prada Willi Syndrome Tamara Our Condition PWS Prada Willi Syndrome does not have to limit You Us and does help people to be aware of Your You’ er syndrome PWS Prada Willie Syndrome Our Syndrome Prada Willie Syndrome and to help You lead a normal life help to Us lead a normal life Prada Willie Syndrome does not limit You is not limiting and people with Prada Willi Syndrome can lead a normal life it is good very good really good nice very nice really nice lovely very lovely really lovely wonderful very wonderful really wonderful fab fabulous fantabulous fantastic brilliant great super superb awesome to know Tamara is still doing well it is good very good really nice very nice really nice lovely very lovely really lovely wonderful very wonderful really wonderful fab fabulous fantabulous fantastic brilliant great super superb awesome to know You are still doing well Tamara I Am prod very proud really proud of You for doing this presentation on PWS Prada Willi Syndrome Tamara well done very well done really well done on doing this presentation on PWS Prada Willi Syndrome Tamara I Am glad very glad really glad You are still doing well Tamara.
See You Tamara.
Bye Tamara.
Lots of Love and Best Wishes.
Love from Joanna.
X X X X X X.
She’s beautiful man
Tamara where is Joe
He passed away
@@samuelduvall8130 proofs?
i looked into it via the other posts. sad :(
Yes joe passed away
@@johnkinahan4230 No way :( you got proof??
This poor woman. I've watched her progress for the past 10 years or so and she is in so much emotional pain.
This is a genetic anomaly that means certain death if not untreated. But at what cost is the treatment? They are never satisfied, are cognitively impaired, and will never have a hope of a normal life.
Is incredibly sad to say but i feel like this genetic disorder is a means of natural selection, and prolonging the inevitable is cruel.
growth hormones for little ones about 5000 maybe for a set in England I get them for free because of the nhs
Shes kinda stuck in a home. Dhe should be able to work.
Jeez you didn’t even bother to tell us what it is.
Joe died
This be control because am a living witness to this all thanks to Dr Noble remedy home for healing my son Robert
Any news of Joe Blackburn?
He's long dead.