Isabelle’s Story
15 year old Isabelle has pancreatitis, she was diagnosed shortly after her 13 year old sister, Grace was. Read Isabelle's story here.
My name is Isabelle and I am 15 years old. My story begins in May 2020, part way through lockdown. I woke one morning feeling ill. I had pain in my stomach and I looked pale. We thought it might be a stomach bug, but because it was lockdown, I hadn’t been anywhere to catch a bug!
The following morning, I woke in even more pain and was sick. My mum recognised the pain was in a similar area to my pancreas and it was also in my back. She called 111 and they told us to go to hospital.
At A&E, my mum told them about my sister’s pancreatitis (you can read by little sister Grace’s story here). Mum asked them to check my enzyme levels. Before the results came back, I was given pain medication and they admitted me. My results came back to show I was having an acute pancreatitis flare.
I started to look a bit better a few days later so I was discharged, only to return the day after, as the pain returned and I was sick again. Between May and August 2020, I spent 28 nights in hospital with a number of flares, an infection, a kidney problem and ongoing pain. I was so weak and I lost weight. My genetic tests identified the same genetics as my sister and so I received the diagnosis of A-typical Cystic Fibrosis.
The worst thing for me was being told it was rare and how differently I had to manage my pain. I have never felt pain so extreme and at times it radiated to my back and shoulder blade. I was being told that I couldn’t have IV morphine. When I had felt a bit better, I had tried a lower level of pain medication, to only find it didn’t work. I was encouraged to eat as soon as I stopped being sick, but then I would feel pain when I was eating. It made me scared of eating.
I am struggling to gain the weight I have lost. I am a Kickboxer and train hard, so to return to training, lighter and with less muscle mass has been tough.
It is now November 2020 and I haven’t had another flare, but I don’t know when that will happen, it is just so unpredictable. When I look back, I was poorly in January and I think I may have had a flare then too.
I have changed my diet, against medical advice, and also try to stay well hydrated. My Cystic Fibrosis genetics qualify for a genetic modulator medication. The hope with starting this treatment, is that my body will work better and it decreases the chances of having another flare. I hope so, I have my GCSEs next summer and I don’t want to be in hospital.
My sister Grace and I hope that one day, pancreatitis will be a condition of the past.
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 pancreatitisand 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.
