22/05/2023 | Press releases

‘I have tumours all over my body because of rare condition’

One brain tumour, two spine tumours, one inner ear tumour, one pancreatic tumour and several eye tumours.

It’s not a rundown anyone would want to list, but it’s the reality for Georgia Shephard who is living with a very rare genetic condition causing multiple tumours and cysts across her body.

They’re not cancerous – at the moment – but the genetic condition has life-limiting issues for the 34-year-old who was diagnosed three years ago.

Man and woman standing on top of a building
Georgia with husband Lee

Georgia, who works for ESNEFT as an executive assistant, said: “I had no idea I had the condition until I went to New York and felt dizzy on the plane. The dizziness didn’t really stop, so I ended up going to my doctor and initially it was thought I had an inner ear infection.”

After various medical appointments and a MRI scan, Georgia was told she had a brain tumour.

“It was such a shock – my body went completely cold. Nothing really prepares you for news like that.” Georgia said.

Georgia was referred to Queen’s Hospital in Romford for more specialist treatment where the 3cm tumour, which was a hemangiblastoma, was removed in October 2019.

Back of person's head with scar
Georgia’s scar from the tumour surgery

Georgia, who is married to Lee who also works at ESNEFT in IT, said: “When they found it initially it was 2cm and I was told it was slow growing, but by the time I had surgery it was 3cm.”

A full body scan then revealed another tumour on her pancreas and concerns around the reason why they were developing began to grow.

Georgia added: “There were investigations and medical appointments looking into what was going on over the next year.

“Lee and I wanted children and we decided we just had to go for it – so I was really pleased when I fell pregnant in February 2021.”

Woman in sunglasses and stripy dress
Georgia Shephard when she was pregnant in the summer of 2021

It was while Georgia was pregnant the rare genetic condition Von Hippel-Lindau (VHL) disease was mentioned. Although no one in Georgia’s family had the condition, tests confirmed the diagnosis. It also meant a 50% chance she could pass it onto her unborn son.

Georgia said: “It was incredibly worrying thinking he might have it too. I also found out I had two more tumours, or cysts as they’re sometimes called, on my spine – so I had to have a general anaesthetic and c-section.

“I hadn’t really contemplated the sheer impact on my mental health and it was a huge relief when Remy was born healthy – but grunting due to the anaesthetic. We still had weeks to wait to see if he’d inherited VHL from me and that was one of the hardest things.”

Man and woman in sunglasses smiling at camera holding a little baby
Georgia with Lee and baby Remy

Fortunately three months later Georgia had the best Christmas gift ever when it was confirmed by Great Ormond Street Hospital that baby Remy hadn’t inherited the condition from her.

Today Georgia’s condition is monitored closely and she has regular scans going to various hospitals including Barts and Moorfields for her eyes. She’s had eye tumours lasered off, cysts removed and tumours she still has are monitored for growth. She’ll never recover from VHL and it’s a life-long condition which is exhausting physically and mentally.

Woman in hospital chair with eye patch putting her thumbs up to the camera
Georgia following eye surgery to remove one of the tumours

She said: “The mental trauma has been enormous. I can’t face joining specialist groups – Lee has done that for me – and I’m tired so much of the time. I also still get dizzy and off balance a lot. It’s been a lot to process, but I want to raise awareness and let people know this exists, because it’s such an unknown condition. More people need to know, and more research needs to be done.”

Georgia and her family are now training towards the Clacton 10k Sunday 20th August 2023 to raise money towards research into VHL. To sponsor Georgia visit her Go Fund me page: https://gofund.me/c3c35966

Symptoms of VHL range from dizziness, balance issues, headaches, weakness of limbs, issues with vision, deafness or high blood pressure. It’s thought only 1 in 35,000 people have the condition.

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