Andrea’s Story

My name is Andrea, I’m 38 years of age and live with my husband and my three children who are 14, 6, and 17 months. I work part time as an advisor for the NHS 111 helpline, the work is so varied there, no two calls are ever the same. In my spare time I like to be with my family and get out when my health allows it. I spend a lot of time binge watching series on Netflix.

I first found Nerve Tumours UK right after my NF1 diagnosis, I got in touch so I could better understand my condition. The helpline has been a life saver for me; contacting my GP, contacting the medical team, informing them how best to support me. Speaking to Rebecca and the other NF nurses is just a breath of fresh air, they understand NF so well..

It was 2020 when a biopsy revealed my diagnosis. I had never heard of NF before, and I quickly jumped onto Google and was in complete shock that I was living with this condition. I was terrified of how the rest of my life would be. I was initially worried for my two older children and have not stopped worrying since. Their happiness means the world to me.

My journey began with a shooting pain, which my GP initially diagnosed as sciatica, and I was told medication would be the only way forward. It was later during a back massage that a painful lump was spotted and finally some serious investigation started. At first I was passed from one consultant to the next, until I was finally diagnosed with vascular malformation. For a good 6 years I was under a great team of surgeons who were always running tests, my blood was thinned and they administered injections to help reduce the size of the tumours, but nothing helped and I started to notice my mobility and body changing.

I was then sent to a lovely vascular professor in London who attempted to treat my tumours again, it was around that time I was abruptly taken out of surgery and informed that my diagnosis was incorrect. No one could make up their minds.

I saw so many surgeons until I finally met with a surgeon in Leicester who said he could help me, but the surgery would be risky. I was always told a biopsy was dangerous, that I could bleed out on the table, but I took the risk and to this day I’m so thankful to that surgeon; I was finally diagnosed with NF1. Throughout childhood I was perfectly healthy, I have no other symptoms other than what is called a plexiform neurofibroma.

I have clusters of neurofibromas under the surface of my skin, within my pelvis, bowels, buttocks and lower spine. I am aware these are quite substantial, and have been told that the way my symptoms present is a bit out of the ordinary. I also get told by my doctor that it’s a miracle I’m able to walk. My mobility is poor and the level of pain is sometimes difficult to explain. Moreover my youngest child has symptoms of NF, and it’s a constant struggle to get his medical team to not rule out an NF1 diagnosis.

I want my story out there, it's so important to educate those who do not understand NF. I want to help medical professionals gain a better understanding of the condition, and help better inform the loved ones of everyone living with an NF diagnosis.