Meet Gemma

Meet Gemma 

Gemma is 30 years old. She has a BSc in Biology and works as a retail manager at a motorway service station. She got married in June 2018. Here she tells us about life for her with NF2.

My journey with NF2 feels different to others:

I was diagnosed as a child (about 11 years old) in the late 90s. My first surgery was when I was 15 and I had a brain tumour removed. I then had a Vestibular Schwannomas tumour removed and lost the hearing on my right side. I didn’t have any further surgery until 2008, whilst I was at university. My most recent surgery was in 2016, when I had 5 brain tumours removed. I have been on Avastin treatment for 6 years now (with a break whilst I had surgery).

Sometimes NF2 feels like an invisible condition.

A lot of people don’t understand it and because people cannot see your brain tumours, they don’t understand that I have a serious medical condition. Educating the public is very important and I am proud to be someone who can help raise awareness and educate people.

Sometimes I cry, especially after clinic appointments.

It would be lovely to go to an appointment one day and the doctors were to say ‘we have a cure’. But that hasn’t happened yet.

I have decided not to have biological children.

Knowing that I have NF2, and having a 50% chance of passing this on to any children I have, has resulted in me making the decision not to have biological children. (I made this decision when I was 14 years old and when I met my husband – this was one of the first things I told him.) I have overcome this by choosing to adopt (if and when I’m ready for children). I have a niece and a nephew, and I love them and enjoy being a fun Aunt. Anyway, I have a dog now. Who doesn’t love dogs?

Work has become more difficult as my hearing loss has increased.

I often feel overlooked and that because of my hearing loss, some people do not have the patience to repeat things more than once. However, I feel that it’s my responsibility to make my work environment better and I educate my team about NF2 and my team are very supportive.

I have recently started yoga.

It has helped prove to myself that just because I have NF2, with Vestibular Schwannomas on my hearing and balance nerves, it does not mean that I can’t practice yoga and empower myself, strengthening my core.

I have started lip reading and sign language with my husband.

This is a fantastic confidence booster as I have been teaching what I’ve learnt to family and friends.

Surround yourself with positivity, love and support and you’re unstoppable.

I have a very supportive family and a wonderful husband who have listened to me, helped me and supported me through any negativity that NF2 has brought.

I have days when I am sad and cry, but that’s OK.

I don’t let NF2 rule my life and I find the strength to remain positive within myself. Friends and family are supportive but the strongest person I know is myself. I’ll keep fighting anything that NF2 brings and enjoy the life that I want to lead.

Don’t give up hope, try to see the positives in life, even when it’s hard.

Have a cry, dust yourself off and do something you enjoy. Whether it’s hanging out with family, friends, a walk in the park. Anything which makes you happy.