Due to Pseudo Obstruction I am fed intravenously (HPN). Prior to starting feeding I experienced the rollercoaster ride of being misdiagnosed, misunderstood and feeling very isolated. Things have changed and improved!

Being associated with the founder members of PINNT I feel privileged to have been involved since PINNT's inception and continued growth. There was a shared passion to bring together artificially fed people into a forum where experiences, fear and ideas could be shared. We have achieved so much - worked to bring new equipment and services to those on home artificial nutrition.

When I can I enjoy travelling, shopping as well as all the normal things that make us happy! Planning is a key part of life on nutritional support but despite a long term medical condition and feeding I endeavour to enjoy life!

I have been a member of PINNT since 2006/2007. This was when I was put on PN following a difficult set of teenage years. I was diagnosed with Crohn's when I was 10 but escaped major surgery until I was 16. This was mainly with enteral feeds such as Elemental 028 and Ensure. Since then I have had to have a lot of surgery and now have a short bowel so am fed with PN; which for me has made me extremely well. To this day I still hold down a job and I am the only commercial pilot in Europe to be fed in this way.

My personal aims with PINNT are to build on the membership, both PN and enteral so that the 'patient' has a stronger voice should the government look to change anything. I am also proud to be associated with a charity that has made so many differences to patient's lives; PINNT is responsible for bringing portable pumps to the UK, designing certain rucksacks and drip stands amongst others. I look forward to working with the Officers and my fellow trustees to help better the care that patients receive and inform patients.

I joined PINNT back in 2006 following a difficult time in and out of hospital for treatment of severe Anorexia Nervosa. Throughout these periods in hospital I have been feed via nasogastric (NG) tube on and off since the age of 15 and only with this nutritional support have I been able to maintain even a remotely healthy weight.

Following many unsuccessful "normal" treatment attempts, it was decided that I was uable to physically or mentally manage to maintain a healthy weight without life-long nutritional support and I was put onto enteral feeding permanently; at first by NG tube and now by PEG.

My role within PINNT is that of General Secretary, EC member and Literature Co-ordinator, which is support not only by my own experiences of enteral nutrition but also through my undergraduate degree in clinical nutrition and masters in public health.

It is through the support and understanding of PINNT that I was able to grow in strength and confidence; enough to accept & embrace my treatment and my life has improved so much. I feel a deep gratitude to PINNT and everything that they do and I want to help them to continue reaching out to and supporting all those affected by artificial nutrition.

I joined PINNT in 2012 when I was told I would need to be fed Intravenously (HPN).  I had previously spent a number of years on Enteral feed where I felt I was alone and nobody else had this illness.  Having fought going on HPN for a number of years I eventually came to terms with the fact that this was the only way forward.  Being a member of PINNT really helped in the beginning as I could follow discussions on the members forum and see that there were other people out there who were having the same issues as me and look at some of their ways of solving the problem. 
 
I have taken over as Membership Secretary  and would love to see PINNT grow in numbers of those who are artificially fed so that they could have the help, support and piece of mind that they are not alone.  My other wish is that we can reach out to as many  individuals as possible to ensure that those who are Artificially fed are treated correctly when in hospital or Healthcare settings. 

I am an electrical engineer, living and working in small town called Halifax in West Yorkshire. Back in 2016 I was diagnosed with a rare tumour in my neck, it was benign. I had it removed in August that year but unfortunately it’s left me unable to eat or drink, so I am dependent on enteral nutrition. I would like to represent enteral patients and help PINNT fulfil its ethos of supporting people on home artificial nutrition
 
In my spare time I like to play football and go out walking. I have just done Yorkshire 3-Peaks (Y3P) in nine hours 45 minutes. I have tried to run Y3P, which was completed in six hours but also need to add pit stops to that time, at two hours I had a bad turn on my second pit stop, so I will try again one year. Another activity I like to do is play squash, but the main one is running. I have just completed the London Marathon 2019 in three hours 56 mins 34 seconds. Hopefully one day I will be able to complete the main six marathons.
 
I am keen to assist PINNT with all I can, already I have been asked to help with PINNT presentations and looking at enteral rucksacks.

I work in a special needs school. I have worked with children for 25 years 21 of which have been with special needs. Within my job I work with children that have a range of physical and educational needs. I care for children with gastrostomy tubes and nasogastric tubes using various pumps and bolus feeding. I work along side school nursing staff as well as language and speech therapists and dietitians. I find my job really for filing and rewarding. Out of work I enjoy spending time with my family and friends. I have done lots fund raising for charity. I did the Yorkshire three peeks, the great north run, Snowdonia and lots of themed days. Also, in the little spare time I do have I love nothing more then to go in my craft room and be creative.

I have got involved with PINNT as I live with someone that has a gastrostomy tube and see what he goes through day to day. I want to be able help other families that go through what we do. When my husband became sick and we started down the scary journey I felt helpless and so along, I didn’t feel like I had anyone. unsure how our life was going to be I was feeling in a way that I didn’t feel I should as I was not the one it was happening to. I now know this was ok and not wrong to feel like that. I want to be able help other that are in the place I was in.

Also I want to be able to offer the knowledge that I have gained along my working life.

I am looking forward to this new and existing journey with you all at PINNT.

My major health problems began in 2002 when I was struck down with severe M.E. This was followed by other chronic conditions, including gastroparesis and gut dysmotility.
 
Oral nutritional sip feed became my sole daily menu from 2011, but over time this proved inadequate to sustain me. In 2019 this was combined with enteral nutrition and now parenteral has been added.
 
Despite being predominantly housebound with multiple chronic illnesses, I still manage to make the best of life. When my health allows, I enjoy reading, cross stitch, taking photos in the garden, doing church activities via Zoom and connecting with friends.
 
When I joined PINNT in 2014, I quickly realised that I wanted to give back to the charity, as it offers such amazing help and support to those on Home Artificial Nutrition (HAN). The huge daily challenges of living with severe M.E. mean I’m limited in what I can do, but over time I’ve found small ways to help.
 
As a member of Team PINNT, my participation has become more varied. It’s exciting to know that every small contribution I make helps towards the overall aims of the charity. Although hard on my health, it’s a real honour to support PINNT in this way.
 

Being part of PINNT is a privilege and great opportunity to support and champion those of home artificial nutrition (HAN). 

Home artificial nutrition has been a huge part of  family life for the past nine years when our middle son, Ezekiel, started on his journey. 

PINNT has supported us right from the beginning. Bringing him home as a little baby with an NG tube, to this very day, where he is fed via surgical Jej and drianned via Freka PEG. 

As a parent carer a personal goal of mine was the try running more during 2023. After completing the couch to 5K course,  I embarked on the Durham City 5k to raise awareness of PINNT. I hope to continue running and raising awareness. 

I look forward to working with PINNT on the executive committe and generally to support people on HAN.