At the age of 5, I was diagnosed with Von Hippel-Lindau (VHL) after being tested for the disease as a result of my father, and many other members of my family, also having VHL. More recently, my little sister Farina received the devastating diagnosis of VHL.
Unfortunately for me and Farina, and every single other VHL patient, we will battle a series of malignant and benign tumours/cysts throughout our whole lives.
Myself and Farina’s auntie lost her life to VHL, and our 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.
I am now 20 years old, and I have suffered significantly with VHL. I have had to go through 6 operations (from the age of 7) to remove tumours (lesions) on my eyes with one of them resulting in detachment of my retina with no possibility of reattachment. This has caused me to lose vision in my right eye impacting every day life and massively knocking my confidence. In April 2022, I had to go through an extremely big operation to remove two tumours on my kidneys which resulted in a healing time of 1 month and missing out on a part of my first year at university. I have since recovered from these surgeries, but I still suffer with high pressure and pain in my right eye and have to go to multiple appointments a year.
18 year old Farina, my 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 has had to recently have another surgery for this. Along with this, Farina, just like Brea, will also have to attend appointments throughout her entire life to monitor her condition.
This cause means the most to me, farina and all of our loved ones; therefore, it would be greatly appreciated if you could consider allowing Welireg to introduce some sort of hope in our lives. Thank you
