A mum from Bexley living with a disease that causes tumour growth is calling for a new drug that could vastly improve the quality of her life to be approved for use in the UK.

Kathryn Chapman, from Bexley, lives with Von Hippel-Lindau (VHL), a rare disease that can cause the growth of both malignant and benign tumours.

It affects 1 in 36,000 births and can cause the growth of tumours in several places in the body, including the brain, spine, eyes, and pancreas.

The mum-of-one was first diagnosed with the illness around the age of 10, due to her father, now aged 76, also having the same condition.

However, Kat described watching her father’s battle with the illness, as he underwent difficult surgeries, as being more difficult than her own battle with the disease.

The 41-year-old said: “I remember my dad had brain surgery when I was 18, and I had to go and collect my A-level results the day that he had his surgery booked. But he got really ill before the day came, and he had to have it done as an emergency.

“It's harder to watch than it is to suffer with it, you just feel so helpless when it's someone you love."

Kat told News Shopper that the illness “nearly” prevented her from having a family when she made the “difficult decision” to refuse to have children after her first brain surgery.

However, Kat and her husband were offered the chance to have a child through IVF and pre-genetic testing, resulting in the birth of her daughter in 2010.

Kat said: “After my first surgery I told my now husband that I didn’t want to pass the illness on to a child.

“But we got the option to have a child through IVF and pre-genetic testing, something that wasn’t around when I was first born.

“I have always been very determined to live my life, and that meant being a mum.

“I've had comments to say it's selfish, but we all take a risk don't we?”

Kat has undergone eight major surgeries to remove tumours from her brain, eyes, kidney, and pancreas, having her first brain surgery at the age of 23.

She currently attends 14 hospital appointments a year - “on a good year” - to monitor and assess the growth of any new or existing tumours.

Kat had a “gruelling” battle following a Whipple procedure in June last year as the surgery, which involved the removal of half of her pancreas, some of her stomach, gall bladder and some upper intestines, left her in intensive care.

Kat said: “It was horrendous. I was in intensive care for two days, hospital for two weeks, and then it was about two months before I could even really get out of bed.

“I think I'm one of the lucky ones, because some Whipple patients can be left with really difficult digestion issues and malabsorption of nutrients, but at the moment I’m doing well.

“I have to take medication with everything I eat, for the rest of my life, check my blood and tweak everything, take lots of supplements and multivitamins now.”

Kat, who works as a self-employed retail consultant, was unable to work following the surgery, and has said that her struggles are not uncommon for people battling VHL.

Kat said: “Since having the surgery I’ve been out of work as I try to recover, which has been very difficult financially.

“I didn’t anticipate being out of work for so long, but at the end of last year, five months after the Whipple’s surgery I had to have brain surgery which set me back further. I’m just starting to pick up work again now.

“But I've lost a lot of clients because of it. It can take a while to build that back up again.

“Living with VHL can be devastating and have a huge impact on quality of life.

“It affects every aspect of our lives from relationships, education, careers, finances, travel and mental health.”

Kat said the option of regular surgeries as being “far from ideal” as the constant need for surgeries poses its “own set of risks.”

However, earlier in the year, the National Institute for Heath and Care Excellence (NICE) began the appraisal process for the use of a new drug known as Belzutifan.

The drug, which was approved for use by the FDA in the USA in 2021, has already been used by patients living with the disease to manage the illness by stabilising or, in some cases, reducing the size of tumours.

Kat said: "I never thought in my lifetime that there would be anything like this.

“This isn't a cure, but it's a solution.

“The thought that there's another option on the horizon, it's very emotional, very hopeful."

Currently NICE is collecting data, with a committee meeting set to take place involving patients and charity representatives in September this year.

The process, which Kat described as “a couple of years in the making”, will involve consulting with doctors patients, carers and charity representatives on the effects that the illness has on their daily life.

Kat, who volunteers as a trustee for the VHL UK and Ireland Charity, is one of the potential candidates who may be selected as a case study , in a bid to try and get the new drug approved for use in the UK.

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Kat said: “I have multiple further tumours currently dormant that could grow at any time.

“But it terrifies me that, one day, one of them may be either inoperable or just one surgery too much for my body, which has already endured so much.

“Knowing I could access this incredible medication, should I need it, could be a massive game changer for myself, other VHL patients and our carers.”