Living with VHL: A Q&A with Julia with One Eye

Can you tell us a bit about yourself and how you came to start using TikTok to share your VHL story?
Thank you for giving me the chance to be featured in your blog! I am 41 years old, originally from Hungary, but I’ve lived most of my life in the UK. This is where I was diagnosed and where I’ve had all of my treatments—at Moorfields Eye Hospital. Due to a retinal detachment, I lost all vision in my left eye 25 years ago. A few months ago, I had that blind eye surgically removed—and this is where my TikTok journey started. I wanted to document the process of having the eye removed, being fitted with a prosthetic eye, and also spread awareness of VHL.

When were you diagnosed with VHL, and what was that experience like?
Although my first VHL manifestation was at the age of 16 (a retinal detachment leading to blindness in my left eye), I was not aware of having this genetic condition until much later—when the issues started in my right eye at the age of 33. I was already living in the UK at the time and attended Moorfields Eye Hospital because I noticed some changes in my vision. The first time I ever heard of VHL was there, in the A&E department. It was a lot to take in! I was terrified of what this diagnosis would mean for my eye, my overall health, and my family. It turns out I am a de novo case—the first in my family.

How has VHL affected your medical care and day-to-day life?
The first four years after diagnosis were really hectic. I had a lot of treatments on my right eye—laser treatments, injections, and surgery. It was overwhelming and scary. I am now classed as severely visually impaired. I also have a full MRI scan every year and blood tests as part of a surveillance regimen. Although I have a lot of VHL-related cysts and tiny tumors in various parts of my body, none of them have needed treatment so far.

How do you cope emotionally and practically with changes in your vision or eye health?
To be honest, it hasn’t been easy. The possibility of further vision loss is always there. My husband is a great help, and so is the rest of my family (although they live in Hungary). I have my down days, but I can also confidently say that I am content—much more so than I ever thought I would be when I was newly diagnosed. Life goes on, and I still have a lot to be grateful for. In practical terms, technology is a great help, but I have to accept my limitations. Certain things I will never be able to do, such as driving.

What motivates you to keep sharing your journey on social media?
The response has been amazing and positive. People lose their vision for various reasons, and the eye removal surgery is scary for all of us regardless of the cause of the vision loss. People tell me that my story gives them strength to go ahead with their own surgery. People tell me that I inspire them, teach them new things, and sometimes even make them laugh. All of this motivates me to carry on sharing my story.

What do you wish people understood better about VHL and living with rare conditions?
I wish people understood that benign tumors are not harmless. The hemangiomas that typically occur with this condition can have devastating consequences for our health. Living with a condition so rare that most people have never heard of it is also very isolating. Raising awareness, therefore, is really important in my opinion.

What advice would you offer someone newly diagnosed with VHL?
Take it one day at a time. Although your life will never be exactly the same as before diagnosis, it can still be great. After the initial shock and confusion, things will settle down and you will get used to this new reality. There are groups on Facebook that are a great help and a good source of information—I highly recommend checking them out.

Is there anything you’d like readers to know about supporting someone with VHL or supporting creators like you who share their stories?
When it comes to supporting creators—ask questions! It helps me decide what topics I should cover in my next video. But please, don’t make pirate jokes!