Kirsty's Story: Living with Neurofibromatosis and Scoliosis

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Kirsty is a writer and campaigner who founded the InfraSisters – a group of women that campaigns for night-time cycle infrastructure that is safe and comfortable for women and girls. While these may seem like small things, they can pose major difficulties for disabled people cycling. Kirsty’s amylase blood levels were outside the normal range, so she was sent for a magnetic resonance cholangiopancreatography (MRCP) scan, a type of scan that can provide detailed images of the pancreas. This test identified that Kirsty had what is known as ‘pancreas divisum’, a birth defect affecting the ducts that go from the pancreas to the gut. Pancreas divisum is rare – it is estimated to affect 5% of the population – and it is still controversial among doctors whether it can cause chronic pancreatitis. Indeed her previous doctors had identified Kirsty had this condition 5 years previously, when she had initially received a set of tests, but they dismissed it at the time as unlikely to be causing her symptoms. In 2010 Kirsty moved to Birmingham and started a teacher training course. Unfortunately her illness made her miss too many days from her course and so she had to drop out (teacher training courses only allow students to miss a few days of their course). This was really upsetting for Kirsty, but a small glimmer of light was starting to appear at the end of her tunnel. The idea of the walk was to celebrate Kirsty’s 50 th birthday. One mile for each year. It needed to be something challenging to be able to ask people for sponsorship.

Under the Patient Safety Incident Response Framework (PSIRF) there will be greater engagement with those affected by an incident, including patients, families and staff. Ensuring they are treated with compassion and able to be part of any investigation. Contents I’m not a dietitian or a qualified chef, but I care passionately about what goes into our food. I don’t think our meals need gluten, wheat or dairy to taste delicious; that’s why you’ll never find them in our recipes. After Kirsty’s death, her family started her supporter goup to raise funds and awareness of brain tumours. I was used to walking on my own so although it was great to have company and it certainly helped, it didn’t worry me when I was solo. I’d put my headphones in and listen to music.

Kathryn’s story

I’ve always enjoyed walking so I thought that’s the obvious thing to do. Originally I planned to do the walk over seven days, but each day during the build up to it I was walking six to seven miles, so if I could do that I could do ten miles a day. So that became the challenge. Once that was set in my mind then there was no way I was going to fail. There was the odd time I thought why am I doing this – but immediately I thought of Kirsty and I knew why. Thanks to your donations of food and funds, things are now getting better for the family, but they do have a long way to go and REACH is continuing to help them with the debts and emotional support. I was diagnosed with NF1 at 11 weeks old, I have always been the type of person to adopt a positive attitude and to live my life to the fullest, despite the challenges that NF1 has given me. I live a very active lifestyle, I sometimes have crazy ideas, which I always try out. This guidance has been published in partnership with the Healthcare Safety Investigation Branch (HSIB) and Learn Together. Mental health support is also important. Pancreatitis, both acute and chronic, can have a strongly negative impact on people’s lives. Some people are in constant pain, which is extremely debilitating, but the disease can also affect people’s diets, how much they can socialise, how active they can be, and it might even stop them from working or from having children.

The family went to visit her in ITU on the Saturday 11th June but they were not able to visit after that due to the Covid restrictions in place at the time. Chloe said: “That visit was heartbreaking, working in the hospital I’ve seen a lot of stuff. But nothing prepares you for when it’s your sister.” In a small room that just fitted Kirsty, Adrian, Val, me, a nurse and a consultant, they showed us the brain scan and announced that Kirsty had an aggressive Glioblastoma 4 brain tumour. The prognosis – without treatment – was 6 months. With an operation to remove the high grade tumour, followed by radiotherapy and chemotherapy, 12 to 18 months. Our world stopped then.” There is not a lot of information for you to sit down and read about the condition “Neurofibromatosis”. When your told that you or a loved one has any kind of illness or condition it can be really scary.An operation and a period of radiotherapy and chemotherapy followed. During this time, Kirsty was using a wheelchair because she had damaged her ankle in the accident. But she was able to leave that behind by January, which brought a new regime of chemo treatment. Kirsty remained very positive and got on with the day to day business of being a mum. But an MRI scan at the end of this treatment period revealed that the tumour was re-growing. A further operation was considered too dangerous. And one last course of chemotherapy failed to shrink the tumour, or halt its growth. Chris said: