A HEREFORD mother and daughter have been living with a rare genetic condition.

Sarah Mifflin, aged 51, and Jade Chamberlain, 29, have Von Hippel-Lindau (VHL), an inherited condition characterised by an abnormal growth of both benign and cancerous tumours and cysts in many parts of the body. 

"VHL has impacted me since the age of 43 when I had noticed the problems which caused me to have various major brain surgeries in the space of a couple of months and they diagnosed me with the condition," said Sarah, who is currently under a specialised team at Queen Elizabeth Hospital Birmingham.

"VHL has caused me to have a benign brain tumour and a benign tumour which is really close to my spine which they can't operate on it at the moment because it is too dangerous to.


"Also, I have various cysts in my liver, kidneys and pancreas which don't cause problems at the moment, this is all part of what comes with the illness.

"From the operations I have had I have been left with no feeling in one shoulder one leg and a hand I can't use as much as I used to and it has also affected my balance. I am very grateful that I am living to tell the story of this horrid disease there is at the moment no cure but research is taking place all the time."

Jade, meanwhile, was diagnosed in 2017. Over the course of the past seven years, she has had a small lesion in her pancreas and cysts in her kidneys.

In 2021, she had brain tumour, before being diagnosed with another one just a year later. 

"VHL has hit our family hard, with at least five of us having the gene," said Jade.

"Every year when we get the results we are always dreading what we are going to receive but always living life to the max while we can."

On February 29, a day of awareness was held for sufferers of VHL.