15 Day Cold Water Challenge - VHL Awareness

At the age of 5, our amazing Brea (left) was diagnosed with Von Hippel-Lindau (VHL) after being tested for the disease as a result of her father, and many other members of her family, also having VHL. More recently, her little sister Farina (right) received the devastating diagnosis of VHL.

Von Hippel-Lindau syndrome (VHL) is a hereditary condition associated with tumors arising in multiple organs. The gene that is involved in VHL is also involved in other more common cancers, such as kidney
cancer and breast cancer. VHL-related tumors include hemangioblastomas, which are blood vessel tumors of the brain, spinal cord, and retina. Unfortunately for Brea, Farina, and every single other VHL patient, they will battle a series of malignant and benign tumours/cysts throughout their whole life.

Brea and Farina’s auntie lost her life to VHL, and their father lost both of his kidneys due to the number of cancerous tumours on these organs, resulting in him being on dialysis for over a year. This highlights the seriousness of the disease and how VHL can have a serious damaging effect on patients’ physical and mental well-being, whilst also affecting loved ones of these individuals.

Brea, who is now 20 years old, has suffered significantly with VHL. She has had to go through 6 operations (from the age of 7) to remove tumours (lesions) on her eyes with one of them resulting in detachment of her retina with no possibility of reattachment. This has caused Brea to lose vision in her right eye impacting every day life and massively knocking her confidence. In April 2022, Brea had to go through an extremely big operation to remove two tumours on her kidneys which resulted in a healing time of 1 month and missing out on a part of her first year at university. Brea has since recovered from these surgeries, but still suffers with high pressure and pain in her right eye and has to go to multiple appointments a year.

18 year old Farina, Brea’s younger sister, has recently been diagnosed with VHL in November after seeking medical attention to a loss of sight in her left eye. This loss of sight was a result of her retina detaching caused by a huge number of tumours in this eye. After scans and reviews of her eyes, Farina was told that she has multiple lesions in both and had to undergo surgery to remove these and hopefully attach her retina in her left eye. Fortunately for Farina, this reattachment was successful and she has now regained sight back in this eye. However, the surgeons could not remove all of the tumours in her right eye, meaning she awaits further surgery. Along with this, Farina, just like Brea, will also have to attend appointments throughout her entire life to monitor her condition.

VHL is a disease that not many people know of and, as a result, we are participating in the cold water challenge to raise money and awareness to the cause. On March 7th, we will be jumping in Bournemouth sea for 15 consecutive days and will document each day/post updates of the fundraiser.

Brea and Farina are the bravest individuals and still manage to remain two of the most loveliest and positive people. This cause means the most to them and all of their loved ones; therefore, it would be greatly appreciated if you could join us in raising money for this important charity to show your support for the cause and for our Brea and Farina.

Thank you in advance for your contribution to this cause that means so much to me.

More information about VHL UK/Ireland: a.To raise funds for research into von Hippel-Lindau syndrome - VHL and similar genetic conditions like Hereditary Leiomyomatosis and Renal Cell Cancer - HLRCC and Birt-Hogg-Dubé Syndrome - BHD.

b.To support those persons who are receiving or have received treatment for VHL and similar genetic conditions like HLRCC and BHD, and their families and carers.

c.To advance the education of the public in all matters concerning VHL and similar genetic conditions like HLRCC and BHD.