My name is Fiona Reid, I’m 35 and i was diagnosed with VHL when I was 5 years old.
My mother was a carrier of the gene, which myself and my sister sadly inherited.
The first memory I have is sitting in the waiting room at the children’s hospital in Glasgow waiting to have my eyes checked. I hated the whole process but I remember I was always cheered up when it was over and I got a hot chocolate and a play on the indoor slide at the hospital cafe. For myself the VHL has caused all eye and kidney problems.
I was 13 when I had to have an eye operation. I was very nervous waiting to get my first general anaesthetic but all went well and from then on I had laser and cryotherapy over the years until my doctor decided to try radiation plaque treatment on my hemangioma. This also worked well and with regular check ups and some more laser sessions my eyes were ok until November 2020 when I had my first detached retina. This gave me a real shock as everything just went green one day and I was brought in for surgery right away.
Thankfully the surgeon was great and managed to save the vision in my left eye. Sadly my right eye decided to detach a year later. They managed to get some vision back in this eye which was brilliant but in 2023 while pregnant with my little girl it detached again and I sadly lost the vision in my right eye.
I was 15 when I had to have surgery on my right kidney. I had many growths in both which were well monitored and when needed I would have them zapped with laser to start with and then the surgeons moved to using freezing treatment as well. Thie kept things at bay until January 2014 when my kidney surgeon decided the kidney would need to be fully removed. The cyst had grown in an awkward area and if only that was taken away the rest of the kidney would die as it would have had no good blood supply reaching it.
This news really caught me off guard and I remember crying the full way home to my mum and dads. I was in such a state my dad poured me a large whisky to try calm me down!
I got the surgery and amazingly my surgeon managed to remove the full kidney through key hole so I only had a few wounds which all healed really quick and I was back to work about 3 weeks later. That May I got pregnant with my first child and my son was born in January 2015.
However, come May 2015 my left kidney had a large cyst which had grown bigger while pregnant and this time I was told I would need a partial nephrectomy.
This surgery was my biggest so far and really took it out of me and I wasn’t healing as well as I should of and it turned out the kidney was still leaking. I had to go back in and get a coil in the kidney to stop the leak. My kidney function at this point was really low so I had two sessions of dialysis while in the ward and this seemed to give my remaining part of kidney a helping hand. This was a really nerve wracking time as I was so very ill. I remember my partner saying to me at one point he thought he was going to be a single parent. Thankfully after another month I was more like my normal self and back to work again.
After everything calmed down, I had my check ups and the doctors were happy with my kidney function but did state that dialysis wouldn’t be very far away from my future. I knew this day was going to come at some point but I was hoping it was going to be way down the line.
I got a whole 9 years without any bother from the remaining part of kidney which was fantastic!
I had my little girl in November 2023 and by August 24 my function had dropped quite considerably and I had to have the remaining kidney removed.
This operation was a hard one and the aftermath really floored me as I had to have extract surgery to fix my spleen that had been nicked during the removal of the kidney. I was in hospital 11 days in total and in a lot of pain throughout that hospital stay, however after the spleen was fixed I perked up and getting home to my kids was a great feeling. I then started my dialysis journey…
This was a huge change for myself and my family and took a while to get into the new way of life with all the dialysis dos and don’ts but after 3 months on, things began to click into place.
I also started the wonder drug Belzutifan in August 2025 and the ophthalmology team have already seen it is working in my left eye which is fantastic news.
I am lucky to have no side effects on the drug apart from being a little more tired than usual but that is also a combination of the drug, kids and dialysis.
As of August 2026 I will be active on the transplant list and hoping at some point I will receive a kidney and get back to a more normal life with my family.
We were very sad to find out that my daughter and my niece both have inherited the VHL gene and will have to have the same test and checks carried out throughout their lives to keep on top of things. We have our fingers crossed for them.
VHL has caused myself and my family a lot of stress over the years and will sadly continue to do so for the rest of our lives but what I find best is not to ponder on things you can’t change and just deal with things when they happen. Keeping positive is key. I don’t let VHL get me down and I will be teaching my daughter to have the same attitude towards it too.
Many Thanks for reading my story.
Fiona x
