Grace’s Story

13 year old Grace has chronic pancreatitis. Months later, her older sister Isabelle was also diagnosed with pancreatitis. Read Grace's story here.

My name is Grace and I’m 13 years old. My story starts when I was 6 years old and I had stomach pain. At first, this was thought to be an anxious tummy. As the years went on, I had increased levels of pain and at times I was being sick.

I went back and forth to the GP and hospital referrals, again with the thought it could be stomach acid, stomach migraines, food intolerances and anxiety. It was something I just learnt to deal with.

Early in 2019, I became really poorly. I had more stomach pain, constant diarrhoea. Back I went to the GP, again I was sent away at first, with the thought it could be hormones. As my weight started to drop, I was referred back to the hospital and when discussing my symptoms, I was referred for an investigative procedure for Crohn’s disease.

By now, it is July 2019 and my school attendance had dramatically dropped. I was struggling. Whilst having the Crohn’s investigation, I had an ultrasound. That’s when they found I had a badly damaged pancreas and further tests identified me to be exocrine insufficient (my pancreas wasn’t producing enough enzymes).

But it didn’t stop there. Children don’t often have pancreatitis, especially a pancreas as damaged as mine, so we needed to know what had caused it. In November 2019, I was also diagnosed with A-Typical Cystic Fibrosis as my genetic tests had shown Cystic Fibrosis genetics.

It took me 6 years to be diagnosed with pancreatitis. I still suffer with daily pain, to the point it effects my everyday life. I adore dancing, but have had to stop dancing as the pain just increases. I struggle to attend school and see my friends. This year, my school have helped me and changed my timetable to be just Maths, English and Science, while I hopefully build more energy.

I have found ways to distract myself from the pain and nausea. I have a new interest in makeup. I try different styles and looks and add them to my Instagram account, but sometimes even that can be too hard to do. The pain in my stomach, back and shoulders just means I need to rest and that’s frustrating.

I have recently changed my diet, despite everyone telling me that I don’t have to. I feel better and have slightly more energy. I am also trying acupuncture to help me manage my pain and feel it has made a difference.

I struggle with how chronic pancreatitis has impacted me. People didn’t believe my pain or that I was ill. I live every day with a hidden illness and as it is rare in children, it is also hard to speak to medical teams about how I have to manage.

There is hope, in that my Cystic Fibrosis genetics qualify for a genetic modulator medication, which I will start by December 2020. The doctors don’t know how much it will help, but I am going to try it, to find out.

I hope that one day, I can dance again.

I hope that one day, pancreatitis will be a condition of the past.

"There is no treatment for pancreatitis. There is no cure. When you support Guts UK, you support research striving to discover a cure for pancreatitis, so that one day, I may be able to dance again" - Grace. Click here to donate to Guts UK today.

This year, my older sister Isabelle was suddenly taken into A&E by our mum. This began her pancreatitis journey. Read my sister’s story here.

A parent’s viewpoint – Isabelle & Grace’s mum, Julia:

Both our daughters have pancreatitis, alongside a diagnosis of A-typical Cystic Fibrosis. That’s not something we thought we would have been saying two years ago.

As a family, we have battled, shouted from roof tops and made many phone calls to get to this point today. At times, we have fallen out with medics, voiced our concerns, but equally expressed gratitude to those that have listened and taken time to help.

Having a child diagnosed with pancreatitis is not easy. To have a second child diagnosed, took our battles to a whole new level.

We were not happy with just managing symptoms, for which we manage many; pain, enzyme insufficiency, fatigue, joint pain, nausea, dizziness, low mood and the ongoing uncertainty that we could be heading to hospital with an acute flare at any time. But we do all this our way and we have learnt that at times, we can be battle-weary, but we are also now, battle-smart.

The hours we have spent researching, compiling folders of medical letters and looking for possible support is unquantifiable. We have joined Facebook groups, waded through information, much American, to try and find something that could help.

We have two beautiful, intelligent and caring daughters, who have their whole lives ahead of them. We weren’t going to let a medical diagnosis take this away from them.

Grace has more to deal with daily. Her life is currently very different. She has learnt to manage pain and fatigue, without anyone around her knowing. At times this is to her detriment, as it can go unnoticed and difficult for some to believe. She has had to learn ways to cope and manage, that you wouldn’t want any child or young person to consider. For years she felt unheard and when she received her initial diagnosis, there was a sense of relief as she suddenly had a reason for why she felt poorly.

As Grace has been poorly for many years, in varying levels, we have looked at her support holistically and she currently has acupuncture to help manage her pain, which has worked. We have changed the whole family’s diet to be healthy and limit certain food groups. This too has been positive. Grace has very little active tissue within her pancreas, she will need enzyme replacements for her whole life, but we hope in the future alongside her consultants to eventually cut down on her other medications.

Isabelle has watched her sister struggle and then she received her own diagnosis to match! Although they have identical genetics, it has presented very differently in both. Isabelle has returned to ‘normal’ levels of activity and currently just battles to gain weight. We hope that she won’t experience the levels of symptoms that Grace has, as it’s been diagnosed far earlier in her presentation. She also has no identified damage to her pancreas.

We do feel that we now have the right team in place to help navigate the pancreatitis and related Cystic Fibrosis. That wasn’t straightforward and we would say to anyone, if it doesn’t feel right, you have to ask questions and don’t always think that the medics know everything. We have had to find people that were interested in helping, not just following a standard script. Pancreatitis is rare in children, but we have two and we weren’t going to let that be a barrier to finding answers.

They have qualified for a Cystic Fibrosis medication, again not something that was offered at the start, we had to ask the right questions and make suggestions. We have got there there and it has just been signed off. We wait for the arrival to see how it works. Perhaps, we’ll be back next year to report on its impact.

There is no effective treatment for pancreatitis. There is no cure.

Guts UK is the only UK charity funding a research fellowship into pancreatitis.

People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.