IT is a debilitating condition which many have never even heard of, but for the sufferer it can change their life forever.

Gastroparesis is a long-term chronic illness of the stomach which leaves those affected struggling with nausea, vomiting, pain, weight loss or gain, and in extreme cases, unable to eat.

However, the problem is rarely recognised and patients struggle to get a diagnosis, and afterwards troubles continue as treatment is hindered due to the lack of knowledge on the condition.

To tackle that lack of understanding, patients in Bolton are speaking out to raise awareness of gastroparesis with the aim of giving hope to others who may be suffering in silence.

Leanne Willan, from Little Lever, was born with gastroparesis and shared her story with The Bolton News last year.

The 33-year-old, who has 11-year-old daughter Faith with husband Paul, had a gastric pacemaker fitted in 2008 after seven years being tube fed by total parenteral nutrition (TPN).

Little did she know that living just around the corner from her home was fellow gastroparesis sufferer 33-year-old Sarah Bowker, who contacted Leanne for help after reading her story in the paper — the pair are now firm friends.

Sarah said: "At first I felt like I was alone, it can make you feel isolated, but Leanne has been a great help and we have been supporting each other.

"She has just been there to help me and has said to give her a ring if I'm worried or need help and she has now helped refer me to the consultant in Essex who helped her get the gastric pacemaker fitted.

"You wonder what's going on, seeing doctors, in and out of hospital.You're life is put on hold wondering what's happening and hoping there will be an answer.

"A lot of hospitals haven't heard of gastroparesis, you just get told you're a complex case.

"It is scary because you are just left alone to deal with it. I live at home with my parents and they worry seeing their daughter wasting away and the people you think you should turn to for advice can't help you, so where do you go?

"We definitely need to raise awareness because people don't know about it and that's why it takes so long to get diagnosed."

The worst of Sarah's symptoms started three years ago following a colonoscopy. She was diagnosed last year and had to have a PEG-J feeding tube fitted.

In the past few years she has had to say goodbye to her job in litigation at Royal Bolton Hospital due to her ill health and her social life has come to a standstill.

Recently, both Leanne and Sarah were in hospital at the same time and supported each other, and now Sarah hopes that the specialists who helped her friend will also be able to do the same for her.

Gastroparesis is thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach which means it cannot empty itself in the normal way.

Sufferers experience — among a number of things — nausea, vomiting, abdominal pain, feeling full very quickly and loss of appetite.

It has been linked to problems with diabetes, as a result of damage to the nerves after surgery and irritable bowel syndrome (IBS), but the cause is unknown and there is no cure.

Help can be found at specialist hospitals such as St Mark's Intestinal Failure Unit, London and Salford Royal Hospital, while important research is being carried out in the UK, including the University of London Wingate Institute of Neurogastroenterology and through the County Durham and Darlington NHS Foundation Trust.

Since sharing her story, Leanne has gone on to study textile and design at the University of Bolton, and while her health can still suffer, she continues to push forward and wants to make sure others can too.

She explained:"I'm trying to raise as much awareness as possible because it is so rare and people don't see it. To me it seems to be forgotten about bit we want to show people that there's a light at the end of the tunnel.

"There have been people thanking for me for telling my story and getting it out there so they know they are not alone.

"When I was first diagnosed I had never heard of a gastroparesis, you couldn't 'Google' it and there was no one to speak too.

"If I can help that one person not feel alone then I've done my job, but I want to take it further and help another person. I'm determined to keep going and help raise awareness, push for further research and further funding."

Leanne has been fundraising for the Gastroparesis and Intestinal Failure Trust (Giftuk) which was co-founded by fellow gastroparesis sufferer Natalie Roux-Bean.

Using the power of the internet, Natalie has been helping to connect patients diagnosed with gastroparesis and share information on the condition.

She said: "Since we started the support group online three and half years ago we have welcomed 650 members across the UK. I wouldn't say it's as rare as the statistics show, it's usually misdiagnosed and I think there are more people out there with it but think it is IBS.

"It does not show up in image scans so that is part of the problem identifying it. All our bodily system are different as well so it will show up differently in different people. There are not many who know about it, not many specialists who work in that field and it just doesn't get that much research.

"When you speak to any patient they are just so grateful to meet up and talk because you think you're on your own, and that is hard. The most important thing for our members is to find someone who understands, it means so much."

To find out more about gastroparesis and the help available for sufferers visit www.giftuksupport.org.

Leanne has put down in writing how she feels about her relationship with gastroparesis, writing a letter to her condition:

Dear Gastroparesis (aka The Green Demon),

After having yet another horrible day with you wanting to come out and play I think we need to straighten things out.

This is MY body, not yours, MINE.

You are like Jekyll & Hyde. Some days you play nice and are quiet in the background but others you’re the green demon who makes my life hell and totally takes over.

You have taken so many special moments from my life that I will never get back.

You behaved on my wedding day (just about) but the worst thing you did was take away precious moments and time I should have had with my new born daughter Faith. I should have been enjoying being a new Mum but instead I was in horrific pain and constantly being sick.

Everything I ate or drank would come straight back up and because of this I ended up in hospital for 6 years missing out on my baby’s early years and not seeing her grow up. Things most people take for granted, first words, first shoes, first day of school.

Paul and I should have been enjoying married life and being new parents and yes you spoiled all that too. You know what though, we would not let you break us. We pulled together with all our power and we would not let you ruin us.

You have taken away so much from me but now I want my life back.

Going to college to study Art & Design was a big step for me. To say to you “I’m going to do what I want to do, not what you want me to do!” As I started on this new journey and began to get more confident, believing in myself that I could do this, have a normal life, you reared your ugly head one more time. You stopped me from eating and drinking again and forced me back in to hospital taking me away from my family and friends once again. I fought back and built up my strength again and returned to college.

The biggest punch in the face to you Green Demon, was that I passed college and got a diploma in art and design. So with knowing I can have control of my life I did the best thing for me and the worst thing for you. I got a place at University and took my studies further. I began to settle in to Uni life and you did the worst thing to me. You made me really ill again, forced me back in to hospital and made it so I had tubes coming out of everywhere. You stopped my studies, from being a mum, wife and friend. Even more unthinkable, you pulled me further away from everyone who I cared about and forced me to Essex (specialist hospital) I was alone and scared but I wasn’t going to let you destroy me. I fought so hard against you and finally I won you over again.

You see Green Demon, you might think you have the power over me but guess what, you haven’t. So next time you want to rear your ugly head think twice think twice because I will always fight back.

Yours Faithfully,

Leanne Willan