Patient stories

Illustration of a rainbow in blue and black

Welcome to the Patient Stories page! Here you can see other young peoples experiences at GOSH or some fun tips to do when you come to hospital or in London.

If you would like your stories or useful tips shared, please contact healthcaretransition@gosh.nhs.uk

Aisha

My name is Aisha, and my journey at GOSH began at the age of four when I was diagnosed with a form of inflammatory bowel disease known as Crohn's. I am now 16 years old and continue to be cared for here.

IBD is classified into two types: Crohn's disease and colitis, both of which cause intestinal inflammation. I have Crohn's disease, which, unlike colitis, affects any part of my digestive tract, including my mouth. Severe stomach pain, diarrhoea, blood in my stool, rapid weight loss, nausea and sickness, and fatigue are all common symptoms for me to experience, particularly during a flare-up. Because of their severity, these symptoms can be excruciating and persistent, interfering with daily life and making it difficult to do anything when they are at their worst.

Because my Crohn's is so aggressive, I've had a number of procedures and am currently undergoing treatments to help manage it. For example, at the moment, I get most of my daily calorie intake from something called parenteral nutrition, which gets infused directly into my bloodstream through a PICC line overnight for 12 hours. This allows food to bypass my gut entirely, minimizing the amount of work it has to do, therefore, reducing the likelihood of future flare-ups. I've also been living with a stoma bag since 2020, and in 2021 I had my large intestine removed as it was too inflamed and damaged, making my stoma a more permanent addition to my life. As well as this, I have a feeding tube in my stomach for any additional feeds and medications, and I continue to visit GOSH regularly for infusions.

I know many other patients will be able to relate to feeling overwhelmed and isolated as a result of their suffering, but I know from personal experience that a positive attitude can make all the difference. Being diagnosed at such a young age means that living with Crohn's is all I've ever known, so I've always been open and honest about my condition. In school, I've given numerous presentations and assemblies to raise awareness for invisible disabilities, charities, and IBD, and in my personal life, all of my friends and family are aware of my journey because I believe that hiding my illness would be far more burdensome than being honest. Despite this, I understand that the journey of loving and accepting yourself for who you are can be long and frustrating for many people, but self-confidence can be gained back so my advice to others is to not rush this process, but rather to be honest with yourself and learn to embrace yourself for who you are.

"Your illness does not define you" is something I hear frequently, but I don't necessarily agree with it. My condition is something I have had and will have forever, so whilst it does not define me entirely, it is an important part of my life that has impacted every aspect of who I am today, so it should not be easily overlooked or hidden. If it wasn’t for my Crohn’s I wouldn’t be so ambitious, resilient, or passionate about making a difference, it is a part of my identity that has given me many opportunities and taught me so much; not only about myself, but it’s also impacted my outlook and how I perceive things in everyday life. As previously stated, self-confidence can be regained. It's critical not to care what others think of you because they'll never understand your struggle, so trying to have this carefree attitude can make a difference.

In addition to being open about my condition, I've discovered that ensuring that I'm heard and acknowledged by the healthcare professionals who treat me helps to create a positive hospital experience. When I was younger, most health-related conversations were directed to my parents because I wasn't always confident to speak up or understanding of what was happening; however, as I grew older, I felt a desire to be more involved in my care and didn't always want my parents to speak on my behalf. As a result, I believe that when you are ready, ensuring that you are heard during these important conversations that should be primarily directed towards you is crucial for giving you more control over your health, as I know it has definitely helped me gain confidence and is preparing me for my transition to adult care.

That being said, I believe that communication is essential, especially for healthcare professionals when relaying important information. Regardless of their situation or age, acknowledging a patient is necessary and there can be ways to go about this; for example, things can be explained in a more simple or playful manner for younger patients so that they understand, even if it is briefly, why something is being done. I also believe that as a healthcare professional, you must understand your patients' boundaries; many of us have had traumatic experiences in the past, so understanding why we may be hesitant to do certain things is a critical part of our care.

My time at GOSH has been full of challenges, but my happy memories far outweigh the bad thanks to the wonderful staff and welcoming environment; I hope to make many more for the rest of my care here.

Illustration in blue and black of three flowers

Aoyin

I want to explain a summary of my experiences arriving and being treated at GOSH. I have Hemi-facial Microsomia; This resulted in an un-developed jaw, ear canal, an extra mirrored ear and a number seven Cleft Palette.

In 2011, I was adopted from China at the age of three. I now live on the South Coast. Shortly after arriving to the UK, I was taken to my GP who then referred my hearing issues to the Audiology department of Royal Sussex Hospital and my Hemi-facial Microsomia problems to GOSH.

My first operation at GOSH in 2013 (I was four years old) was to correct my number seven Cleft Palette, remove extra mirrored ear and make me a tragus. I was welcomed by the lovely staff who invited me to play with the new toys and the dressing up clothes. This plastic surgery was completed by Mr Bulstrode (surgeon). The anaesthesia was painless due to the distraction of the anaesthetist’s funny hat that the others teased him about, this comedy routine meant I didn’t notice the cannula inserted into my hand. All of this alleviated my anxieties.

From then on, I had yearly visits to GOSH and the Audiology department in Sussex. The time off from school was sparse allowing me to learn with my peers and catch up with them on English Language – which I had a disadvantage due to my adoption. Aswell the Audiology tests showed that I could hear well using both ears.

These annual visits were to plan the right time to correct my undeveloped jaw. In June 2022, I had two extra teeth removed from the roof of my mouth under anaesthetic at GOSH, then they fitted braces. A year later, GOSH removed 4 more of my teeth. All of this was to start moving my teeth to the correct position for my anticipated jaw surgery.

I now have regular visits to adjust the braces for the major corrective jaw surgery planned for summer 2025, as well as extra visits to support GOSH in their young people’s voice program YPF. This has taught me extra speaking skills in a friendly active environment that is inclusive of all different medical conditions. I believe this greatly reflects our hospital: GOSH.

Illustrations of a globe, a pile of books and jigsaw pieces

Rose's 10 things to see after your appointment

Make your GOSH appointment an excuse to see something new. Here are some suggestions!

Go book shopping

GOSH and its surrounding area are full of great bookshops. For good value, visit Judd Books on Judd Street, a two-storey bookshop stocked with new and second hand titles. For newer works, you can visit the London Review Bookshop on Bury Place or Waterstones on Gower Street. Stop in the café while you’re there.

Visit London’s oldest art shops

With jars of pigment lining its Victorian shelves, L. Cornellisen and Son, established in 1855, still has its original fittings and is just over a 10 minute walk from GOSH. Russell and Chapple, founded in 1770, is similarly impressive.

Visit the cinema

Take a trip to the Curzon cinema in the Brunswick Centre for a relaxing trip after your appointment.

Crick Institute

Visit the Crick Institute, described as ‘an open door for curious minds’, located next to St Pancras station for interactive exhibitions about science. Their current exhibition is titled ‘Hello Brain!’ and is worth a visit, if only to see the building itself.

Get lunch at Bloomsbury Farmers’ Market

Every Thursday, between 9am to 2pm, Torrington Square becomes filled with vendors serving food from all over the world. There’s plenty to choose from.

Visit the Petrie Museum of Egyptian Archaeology

Filled with 8000 objects (just 10 per cent of their entire collection), this museum is home to artefacts largely found in Ancient Egypt and Sudan. There you can find ancient sandals, bird feeders and a large collection of jewellery.

October Gallery

Just around the corner from GOSH on Old Gloucester St is the October Gallery, an art space hosting contemporary, international and avant-garde works. Take a visit on your way home.

Camley Street Natural Park

Slightly further away, in Kings Cross, is Camley Street Natural Park. Created from an old Coal Yard in 1984, the space is a reminder of how urban environments and nature can co-exist.

Building Centre

Described as ‘the home of the built environment’, the centre is home to temporary exhibitions. Their current exhibition ‘Little Investigators’, examining how children interpret their neighbourhoods, is certainly worth a look.

Visit a famous architect’s home

The Sir John Soane's Museum is the former home of late architect and designer of the Bank of England, Sir John Soanes. Filled with his collection of antiquities, furniture, sculptures, architectural models and paintings, the museum is open to the public and free to visit.