WHEN Ben Parker started to feel tired his GP told him it was “seasonal allergies”.
It was April 2018 and prime time for hay fever, but when his symptoms failed to budge, he returned to the doctor and was given a life-changing diagnosis.
When Ben Parker started to feel tired his GP told him is was seasonal allergies[/caption]
But tests revealed he had a rare autoimmune disease – complement 3 glomerulopathy (C3G)[/caption]
The 42-year-old dad was diagnosed with a rare autoimmune disease that affects the kidneys.
Back when his symptoms began, Ben had just returned from a holiday in Australia when he noticed he was “lethargic” but put it down to a chest infection.
While his GP initially told him it was “seasonal allergies”, further tests revealed his kidneys were only functioning at around 15 to 20 per cent.
Ben was diagnosed with complement 3 glomerulopathy (C3G) – an immune system disorder that causes severe damage to the kidney and affects just one in every 500,000 people in the UK.
Ben was able to have a kidney transplant six years ago but has now deteriorated again and is back on dialysis.
He has now opted for at home dialysis – but is currently having to use his seven-year-old daughter Aveline’s room for treatment.
The family are fundraising to convert their garage into a treatment room.
Ben, an NHS Admin Assistant from Barnsley, South Yorks., said: “I just felt really tired and lethargic.
“I went to see my GP who initially said it was seasonal allergies.”
His partner Sam Parker, 39, a teacher said: “Our daughter doesn’t have a bedroom now, she can’t get to any of her stuff.
“I think she’d like it to go back to how it was, she often talks about when the machine is moved out.”
Ben received his diagnosis in June 2018.
After a year of travelling to the hospital for dialysis, Ben got the call that he had been approved for a kidney transplant in April 2019.
He said: “I came home from work and received a call saying I needed to come to the hospital immediately, it was the most stressful drive I’ve ever had.
“It was rush hour, and we had to get there as soon as possible.
“You just have to drop everything and go.”
Our daughter doesn’t have a bedroom now, she can’t get to any of her stuff
Sam Parker
The transplant gave Ben four years of improved health but by late 2023, his health began to deteriorate again and he was facing the reality of returning to a life on dialysis.
This time, Ben and his partner Samantha opted for home dialysis to allow him to be closer to his family.
When he applied for funding to convert the garage into a treatment room, Ben was told he didn’t meet the criteria.
Sam said: “We got a letter saying we’re not getting any funding because we already have a room we can use.
“We were like, yeah, but it’s our daughter’s bedroom – that was a temporary solution.”
Ben’s daughter now has to sleep in her parent’s bedroom when he uses the dialysis machine late in the evening.
Ben was able to have a kidney transplant six years ago but has now deteriorated again and is back on dialysis[/caption]
He has now opted for at home dialysis – but is currently having to use his seven-year-old daughter Aveline’s room for treatment[/caption]
The family are fundraising to convert their garage into a treatment room[/caption]
The couple has since launched a GoFundMe page that has raised over £6,500.
Sam said: “It got to the point where we thought, we’re not waiting anymore, this could take months.
“The page has been really successful, it’s just taken off, we’ve got enough money to do the build now.”
Ben’s daughter was just nine months old when he was first diagnosed, and he says his health has prevented him spending time with her in the way he’d hoped.
Sam said: “After having biopsies, Ben wasn’t allowed to do any heavy lifting, so he couldn’t even pick her up for six weeks, she didn’t understand why he couldn’t pick her up.
“That obviously led to difficulties at home because I had to feed her and be there all the time to do everything for her because he couldn’t pick her up.
He was lucky strangers found him. If he’d stayed at home, he would probably have died
Sam Parker
“Also when his health is deteriorating, he doesn’t have the energy to play with her. He can’t go swimming because he’s got a catheter line.”
One afternoon, Ben took his daughter for a walk alone and suddenly suffered a seizure in due to fluid build up on his brain due to his chronic kidney disease.
Sam said: “He was lucky strangers found him.
“If he’d stayed at home, he would probably have died.”
Those who wish to donate to Ben and Samantha’s fundraiser can do so by clicking here.
What are the signs and symptoms of C3G?
Complement 3 glomerulopathy (C3G) is a rare kidney disease caused by an overactive or faulty complement system.
The complement system is part of the body’s immune system that helps fight infections.
According to the National Kidney Foundation. common signs and symptoms are:
- Blood in the urine (hematuria)
- Excess protein in the urine (proteinuria)
- Reduced glomerular filtration rate (GFR; reduced ability of the kidney to filter the blood and make urine), elevated creatinine
- Fatigue
- Swelling (edema) of hands, feet, ankles
Speak to your GP if you experience any of these symptoms.
