A rare treat - two young people report back from our rare disease tea party

Since 2014 the British Paediatric Surveillance Unit has held this annual event - young people living with rare disease and health professionals working in the field share their experiences. Our interns went along to find out more...

Afsana and Raheema are Career Ready interns from London's Haverstock School working with RCPCH on a five-week placement with RCPCH. They joined last month's BPSU rare disease tea party, and have shared their impressions.

Afsana's story

Afsana (age 17) has been working with our Digital and Creative Media team.

I was completely blindsided towards how many people are diagnosed [with rare disease] every day

This event was definitely an eye opener for me and highlighted the importance of not disregarding ‘minor’ symptoms because they seem unfamiliar or are viewed as a small problem.

Baroness Nicola Blackwood, Parliamentary Under Secretary of State for Public Health and Innovation, gave a heartfelt speech about herself and her diagnosis of a rare disease. Her story was amazing. For 30 years, Nicola remained undiagnosed, getting referred from doctor to doctor, no one was able to identify what was wrong with her. Many years later, she visited another doctor who was able to diagnose her with Ehlers-Danlos Syndrome within the hour. Regardless of how unwell she felt, Nicola fought through her condition with the support of her loved ones, illustrating a strong front, which inspired many people.

All the guest speakers involved in this event emphasised the lack of representation for rare diseases, and how the importance and significance of rare diseases are almost neglected.

You have people advocating for you, people in the heart of the system

Baroness Nicola Blackwood, Parliamentary under Secretary of State for Public Health and Innovation

Next up was Dr Lucy McKay, Founder and CEO of Medics4RareDiseases, an organisation that aims drive an attitude change towards rare diseases among medical educators, students and doctors in training. Lucy and her team work together to become allies and empower those individuals who suffer from a rare disease.

I went into this event uneducated about rare diseases, completely blindsided towards how many people are diagnosed every day and how many individuals are overlooked because their condition is difficult to recognise. I wasn’t aware how common rare diseases are amongst the population – ironic right?

As Lucy said about rare diseases:

Individually rare, collectively common

Dr Lucy McKay, Medics4RareDiseases

Raheema's story

Raheema (age 17) has been working wit our Children and Young People’s Engagement team.

It was a very lively and friendly atmosphere, the young people and children there made it very comforting for me

The BPSU hosted its annual Rare Disease tea party in July, where it brought together multiple people with various ages and backgrounds that all had an experience with a rare disease. People travelled from far and wide just to attend. The event was held on the sixth floor at the RCPCH London office. It being my third day as an intern, I had the opportunity to attend and it was a very eye-opening experience.

Numerous experiences and stories were shared, and the speakers were kind enough to talk about their struggles, dealing with a rare disease and opened up a lot about how they felt in their past. Having not much knowledge about the cause itself, I learned quite a lot of information which I never knew before. I learned about who the BPSU are and what it does, as well as the other charities there. It was a very lively and friendly atmosphere, the young people and children there made it very comforting for me, so I didn’t feel out of place. There was also a good networking and socialising segment between the speakers' presentations.

The speaker who stood out most for me was Sarah Lippett (pictured above) who is an artist/author. Her next book A Puff of Smoke is due to be published in November 2019. I think what made it unique was the use of hand drawn visuals, which made it very personal and intimate. By going in to fine detail, it felt like I was living inside her memory.

I am very grateful to have been a part of the rare disease tea party, it has given me a new perspective and more of an awareness about the hardship and how important it really is. As glasses were raised and chit chat was exchanged it felt like a community where strangers got along all because they had one thing in common - rare disease.

More about the rare disease tea party in 2019 and previous years