This article is from the source 'bbc' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.
You can find the current article at its original source at https://www.bbc.co.uk/news/uk-wales-47802635
The article has changed 3 times. There is an RSS feed of changes available.
Version 0 | Version 1 |
---|---|
Arthritis: 'Doctors said I was three hours from death' | |
(about 7 hours later) | |
When Lowri Wynn Morgan began to feel pain and stiffness in her hands in her mid 20s - arthritis was the last thing on her mind. | |
But the barrister from Grosmont, near Abergavenny in Monmouthshire, was eventually diagnosed aged 27. | |
Doctors said her medication almost proved to be fatal when she developed an infection which led to sepsis. | |
Less than 0.5% of people aged 15 - 34, are affected by rheumatoid arthritis. | |
Now 32, Ms Wynn Morgan admits it was a "shock" for family and friends to learn that she had arthritis given its rarity in young people. | |
"At first the doctor wasn't overly concerned and just put it down to aches and pains," she said. | |
"More awareness is needed that arthritis affects younger people. The stock response is, 'you're not old enough to have arthritis.' But I am. | |
"It would be of real benefit to young sufferers to know they are not unusual or strange." | |
The medication Ms Wynn Morgan was taking for the constant pain in her feet, back and shoulders affected her speech and caused some of her hair to fall out. | |
It also made her susceptible to infection and in 2017, a serious kidney infection developed into sepsis. | |
"I wasn't fully aware of the risks and according to the doctors in A&E, I was three hours away from dying from the sepsis," she said. | |
"That has been a huge shock. I now realise I need to take a lot better care of myself. But I know the general prognosis is that it's likely to get worse as I get older." | |
Fflur developed the first signs of juvenile idiopathic arthritis when she was aged five. | |
She said her knees hurt so much she could not walk down the stairs, her parents thought she was being silly. | |
The debilitating condition affects one in every 1,000 children in the UK, but Wales does not have any full-time paediatric arthritis specialists. | The debilitating condition affects one in every 1,000 children in the UK, but Wales does not have any full-time paediatric arthritis specialists. |
Wales' shortage of paediatric rheumatologists means Fflur has to travel to Alder Hey Hospital in Liverpool for treatment. | Wales' shortage of paediatric rheumatologists means Fflur has to travel to Alder Hey Hospital in Liverpool for treatment. |
Welsh Government funding has now been agreed for a new service in Cardiff. | |
Fflur, now 10, often had to be carried downstairs by her parents who, at first, grew frustrated. | Fflur, now 10, often had to be carried downstairs by her parents who, at first, grew frustrated. |
They thought she was joking when she said she could not turn her head and it was only when she was unable to perform a certain move during a ballet lesson that her disease came to light. | They thought she was joking when she said she could not turn her head and it was only when she was unable to perform a certain move during a ballet lesson that her disease came to light. |
"My knees and neck hurt and I couldn't speak properly but I don't let my arthritis stop me doing any of the things I love doing," she said. | "My knees and neck hurt and I couldn't speak properly but I don't let my arthritis stop me doing any of the things I love doing," she said. |
Fflur, who lives in Llanfairpwll on Anglesey, can continue her passion for dance, acting and music with daily tablets and injections every fortnight. | Fflur, who lives in Llanfairpwll on Anglesey, can continue her passion for dance, acting and music with daily tablets and injections every fortnight. |
"People are really surprised that Fflur has arthritis because they don't expect someone so young or energetic to have the condition," said her mother Anwen Edwards. | "People are really surprised that Fflur has arthritis because they don't expect someone so young or energetic to have the condition," said her mother Anwen Edwards. |
"She still leads an active life but the problem is that expertise for treatment isn't available locally." | "She still leads an active life but the problem is that expertise for treatment isn't available locally." |
Wales is the only country in the UK without a full-time paediatric rheumatology service. | Wales is the only country in the UK without a full-time paediatric rheumatology service. |
The National Rheumatoid Arthritis Society said getting a diagnosis could be difficult because symptoms were sometimes put down to growing pains and arthritis was "often the last thing" parents would consider. | The National Rheumatoid Arthritis Society said getting a diagnosis could be difficult because symptoms were sometimes put down to growing pains and arthritis was "often the last thing" parents would consider. |
Mary Cowern, Wales director at Versus Arthritis, said many people with arthritis, particularly younger people, "hide the true impact" the disease has on their lives. | Mary Cowern, Wales director at Versus Arthritis, said many people with arthritis, particularly younger people, "hide the true impact" the disease has on their lives. |
An estimated 800,000 people in Wales have arthritis and related conditions and there are seven unfilled rheumatology consultancy posts in Wales. | An estimated 800,000 people in Wales have arthritis and related conditions and there are seven unfilled rheumatology consultancy posts in Wales. |
Dr Ceril Rhys-Dillon, a rheumatology consultant at Royal Glamorgan Hospital, said health boards were "underperforming" as a result. | Dr Ceril Rhys-Dillon, a rheumatology consultant at Royal Glamorgan Hospital, said health boards were "underperforming" as a result. |
"They cannot perform and deliver the services they need to because they are so stretched," she added. | "They cannot perform and deliver the services they need to because they are so stretched," she added. |
"It's an enormous problem for patients in Wales to access the right help when they staff is not in place." | "It's an enormous problem for patients in Wales to access the right help when they staff is not in place." |
The Welsh Government said it "fully aware" of the impact of arthritis. | The Welsh Government said it "fully aware" of the impact of arthritis. |
A spokeswoman added: "That is why funding has been agreed for a new paediatric rheumatology service which will be provided by Cardiff and Vale University Health Board. | A spokeswoman added: "That is why funding has been agreed for a new paediatric rheumatology service which will be provided by Cardiff and Vale University Health Board. |
"We are also actively working with health boards to recruit additional rheumatology consultants through our Train Work Live campaign." | "We are also actively working with health boards to recruit additional rheumatology consultants through our Train Work Live campaign." |