Meet the man using TikTok to raise awareness of his rare kidney disorder

A man with a rare kidney condition has gained thousands of followers on social media site TikTok by documenting life after his diagnosis.

Darren Daniel, 41, from Neath, was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) nearly six years ago.

The disease attacks and damages the glomeruli - the tiny filtering units inside your kidney where blood is cleaned - and can affect both adults and children.

"Before my diagnosis, I had never even heard of it - or any other chronic kidney diseases for that matter," Darren said.

"The main symptom for me was the fatigue - I was tired all the time in work. I was usually falling asleep on the way home, which was unusual."

Darren's other symptoms included cramps and swelling, especially in his ankles, as well as high blood pressure, frequent nose bleeds and stomach problems.

He initially thought the issue was to do with his stomach - but tests revealed a problem with his kidneys.

"I went to the doctor and described my symptoms, and then had a blood test and a urine test - and they found they was too much protein in my urine and not enough in my blood," he said.

A kidney biopsy followed to determine the cause of Darren's kidney failure and he was subsequently diagnosed with FSGS.

"To help myself and others deal with this horrible illness, I started to make TikTok videos explaining the symptoms, tips on dealing with it and how to help slow down the progression of the disease," he explained.

"Before the diagnosis I was virtually unaware of kidney disease. The only words I'd heard were 'transplant' and 'dialysis' - that was it, basically."

  • 'It's a coping mechanism' - Darren on why he turned to TikTok after his diagnosis

The content of Darren's TikTok videos includes common symptoms of kidney disease, his own experiences with the condition and his fundraising efforts for kidney research.

"TikTok is a good coping mechanism to share your story," he told ITV News.

"There's people in the same boat; further stages than I am. People get in contact with you and they share their experiences as well. So I find that's been the best way for me - to talk through it with other people who are understanding of it as well. Social media is an amazing tool - it can be, anyway."

Darren has amassed more than 30,000 followers on TikTok and says the number is "growing every day", with ten million views and more than 200,000 likes across his videos.

"It's been brilliant," he said.

"The best reaction for me is people coming back to me and saying they've had symptoms, they've been checked and tested, and now they've got a diagnosis of kidney disease as well."

Darren says his own diagnosis changed everything - he has to take medication daily, attend regular hospital appointments and even adapt his diet.

Despite his condition being tiring and time-consuming at times, he is determined to stay positive.

"It's better for me to manage it than to suffer," he said.

"I've got a life to live, I've got a job to work, I've got bills to pay, I've got a child to look after. So I try not to let it impact on me too much."

For advice and support on kidney disease, visit Kidney Wales or the National Kidney Federation.