Kirsty's Story: Living with Neurofibromatosis and Scoliosis

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When you get told something, yes you might get upset -but your body changes and you’ve got to change too. It’s crazy how much your life can change – but I genuinely think it makes you a better person. Maggie's and me Kirsty spoke critically of home abortions saying how people talk about the procedure happening in the ‘comfort of your own home. Without travelling to a clinic or hospital’ but in reality her experience is that the memory of the loss of her child is now in her home forever and ‘it’s no longer the safe, happy place it once was’.During the abortion Kirsty looked down and saw the blood on her bedroom floor. ‘To this day I’ve still got a stain on the carpet’ she said, ‘Which is all I’ve got left of my baby now.’

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 find it frustrating that a minority of people campaign against cycle infrastructure on behalf of disabled people when so many disabled people are using cycles as mobility aids. I decided to speak with her privately and took her into a quiet room. This was a safe space where she could express herself. If my colleagues were feeling insecure in any way, I was more than willing to offer my support. I reminded her of the importance of person-centred care. Not just for our residents, but for our staff too. Everyone copes with things differently, and we all need help from time to time. This was the first of many long-distance trips which included time in Ecuador, New Zealand and Morocco.

Chloe was working on the 17th June where she had a gut inclination to ring the hospital. She did, and was told that they had to paralyze the whole of Kirsty’s body to try and get her oxygen levels up. Saddled with the worry of whether or not Daisy would actually survive, Kirsty was naturally at wits end and turned to Payday Lenders to keep going. That’s when things began to spiral downwards and her health visitors got in touch with REACH as they were so concerned for her. People like me who are anxious on the road need to be able to trust drivers, but I don't and can’t. There are still chicanes, metal barriers, streets without dropped kerbs, and shared use paths with cars parked on them. I woke up and I didn’t feel anything so I didn’t think it had worked. I just remember lifting up my blanket and it was like a scene out of a horror movie.’

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. 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. Her survey was successful (she got 144 respondents) and came up with interesting and important findings. She found that approximately 35% of patients waited one year or more to get a diagnosis, with 10% of patients waiting over 5 years. Two patients had waited over 20 years before they found out what was wrong with them.During hard times, many health and care professionals just want to talk with colleagues who are going through the same things they are - someone who understands what it's like. Never underestimate people Learn about Kirsty’s Story | Neurofibromatosis & Scoliosis over on her podcast as she starts to date and find love – find out how she tells new potential partners about it.

I am currently 32 years of age, single, and looking for love! I am also in the process of having IVF! As a single mum by choice.Sometimes bad headaches can keep me in bed for a week. I’ll feel the pressure in my head and think ‘not again’. Memory loss is another thing to cope with, forgetting where things are – keys, phone, glasses, anything, everything. Sometimes I’ll be thinking I just held something, and it haven’t had it since last year. As the news sank in, we stayed positive. A close relative of mine had melanoma and recovered after treatment. That would happen for Kirsty, as it was only a mole.

After a number of investigations doctors found a hiatus hernia in her oesophagus (gullet), which was causing severe acid reflux. The burning from the acid reflux had ulcerated the length of her oesophagus and was causing Kirsty to lose her voice. An operation was scheduled, which helped with the acid reflux but afterwards Kirsty knew something was not right. She felt continuous pain, two inches below her breast bone and to the right. The pain felt like it bore right through her and was often severe. Eating, especially fatty foods, would make the pain worse. She also felt nauseous and started to lose weight. 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: I have to choose between the Innocent Tunnel, which is isolated and intimidating, or roads with aggressive and abusive drivers. Life now is .... hectic but in a wonderful way. Having 2 under 2 has its challenges but we wouldn’t have it any other way! We dreamt about having a family of our own and now that dream has come true. Lily adores her baby brother and seeing them together is so special. If someone had said to us just over 2 years ago we would now have a son and a daughter we wouldn’t have believed it, but here we are! I was first diagnosedwith cancer when I was 11 – I had a brain tumour and an abnormal build up fluid in the brain. I was still at primary school.However, due to my injuries I later developed severe arthritis in one knee which is disabling when it flares.