Tell us a little about yourself?

I am Milly, I am 29-years old and live in Kent. I work as the Head of Strategy & Governance for a charity called City Bridge Foundation, which is a 900-year old charity that owns five bridges crossing the river Thames and also distributes £30m a year to charitable causes in London as a charitable funder!

I am the Chair of the Crohn’s & Colitis Young Adults Advisory Panel and adviser to the Board of Trustees – a role I took on in November 2022. A key part of my role was to recruit the first ever Young Adults Advisory Panel for the charity – and I am so pleased to now be working with 11 other amazing young adults who all share similar life experiences of Crohn’s & Colitis.

Can you share a bit about your journey with Crohn's Disease and how it has impacted your life?

I was diagnosed with Crohn’s Disease when I was 19 years old at University, after years of misdiagnosis. Whilst I had been having symptoms for years, I was finally diagnosed during a major flare up where I was being sick almost every day and going to the toilet frequently. As you can imagine, this resulted in extreme weight loss of a very short period!

I managed to cope for a couple of years on medication but when I was in my final year of university, I was put on a 8-week liquid diet to prepare me for major surgery to remove 20cm of damaged bowel (all whilst trying to finish my dissertation, take my exams and go about my life the same as any other 21-year old!)

Whilst it was hoped I would experience a long period of remission after surgery, unfortunately my condition flared up again within a year. This time round, I was put on immunosuppressants to manage my condition, which thankfully works well for me. Although I've experienced another major flare up since then, for the most part I've remained in 'remission' thanks to the medication.

Crohn’s has impacted my life in so many ways. In many ways, I experienced a loss of my health at a young age, which was difficult to deal with. But in others, 

What made you choose to volunteer on the Young Adults Advisory Panel?

When the opportunity arose, it seemed a no brainer to me! I’ve always wanted to be more involved with Crohn’s & Colitis UK, and given my background working for charity and volunteering as Trustee for another, this seemed like a great way to make best use of what I could offer to the charity.

I have found it so motivating leading the panel and working with a group of 11 other young adults who all have similar experiences. It’s been fun, rewarding and emotional all at the same time!

What sort of activities have you been involved in so far, through the Young Advisory Panel with Crohn’s & Colitis UK?

As a panel, we’ve been involved in lots of different discussions about the future direction of the charity, including discussing topics such as memberships, events for young people and campaigns. An ongoing project we are involved is looking at the brand positioning of the charity – this has been a fascinating piece of work to be involved and it has been great to ensure the voices of young people feed into the brand!

For anyone thinking of volunteering, what words of advice would you give them?

Go for it! But in all seriousness, think about the best way you can volunteer your time and skills. That will be different for everyone – some people will be brilliant at raising awareness on social media, others might want to offer their skills and time through a research project.

Why did the Young Adults Advisory Panel want to get involved in My WALK IT 2024?

I think we all wanted to be able to give something back to the charity that has helped us all so much over the years – and this is one small way we can do that!

What are you most looking forward to through your My WALK IT challenge?

I think raising awareness of Crohn’s & Colitis. I think awareness is rising but there is still so much to do around this and break down stigmas attached with the conditions. I hope by sharing my participation in the My WALK IT challenge, I can reach someone who didn’t know about Crohn’s or Colitis and make them more aware of the conditions!

What advice would you give to someone who has recently been diagnosed with Crohn's Disease/Colitis or suspects they may have it?

Don’t be afraid to seek the help you need – whether that’s pre-diagnosis, go get yourself checked and continue to advocate for yourself if you’re not getting any answers; or if you’ve been recently diagnosed, that might mean speaking to your education provider/ employer about what support they may be able to provide you. I would also say if you feel able to do so, speak openly about it to your friends, family, colleagues etc. Having a support network is so helpful. And of course, take a look at the Crohn’s & Colitis website for information and support – but also for ways to connect with others with the conditions.