SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Our Experience with the Student Voice Prize

It’s good to talk – It’s good to listen
(Our experience with the Student Voice Prize)

Hand to ear

One of Cystinosis Foundation UK’s aims is to help inform the medical profession about cystinosis, not only to help with early diagnosis but also to enable patients and families to have a better experience in the healthcare system. When I heard about the Student Voice Prize, run jointly by Findacure (now Beacon) and Medics 4 Rare Diseases, I thought this was an opportunity worth exploring and put my name forward. The idea is that you are paired with a medical student and have a 1 hour talk about the lived experience of your condition.

The Student Voice Prize is an annual, international essay competition that raises the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training. For their essay, students had to choose one of three questions, each focusing on a slightly different aspect.

I received my introductory email in October 2021 pairing me with Ana, a 5th year medical student at Cambridge University. A week later we had a Zoom call. Ana had some pertinent questions but also allowed me the space to ramble on – so important that doctors are prepared to listen to what patients say. She said her essay would cover rare diseases and health inequalities, concentrating on the differences between those with cystinosis and those with diabetes.

On my part I found this an emotional and cathartic experience; being able to relive the feelings we had as a family when we learned of our granddaughter, Ellie’s, diagnosis; the realisation there was no cure; and the absorption of the medical/caring routines into our ‘new normal’. We experienced anger and frustration when Ellie ended up in an acidosis coma in ICU in our local hospital, because the doctor didn’t know about the impact that a normal acidic saline drip could have on a cystinosis patient. Ellie had been admitted because a mouth infection had caused problems with her swallowing her meds and water.

I hope I also managed to communicate some of the experiences others have shared with me e.g. the side effects of cysteamine (nausea and smell) on daily lives and the impact of kidney failure and muscle weakening. Ana said that medical students could read up about the scientific aspects of cystinosis but couldn’t really begin to understand the impact on patients and families affected by the condition. We also talked about our push for better treatments and hopes for a cure.

At the end of our talk Ana thought there might be further opportunities for us to talk to more students through Cambridge University’s ‘Patient Voice’ scheme and maybe even a chance for some fundraising via the student body.

In February this year I received a lovely email:
“And in other news, I got the runner up place for the essay!!!!! I am over the moon, and I cannot thank you enough for all of your help…. This experience has been one of the highlights of my academic year, and so for this to be the result is fantastic. This does not mean that it ends here of course, as with the Patient Voice seminars idea we had – we can continue to spread more awareness about Cystinosis too. All the best, Ana”

Ana’s essay ‘An Eye for an Eye – How Comparisons Between Cystinosis and Type 1 Diabetes Can Reveal Health Inequalities for Patients With Rare Diseases’ is available to read on the BMC Blog (link below), and I’m now in touch with the person who organises the ‘Patient Voice’ seminars at University of Cambridge School of Clinical Medicine where we may be able to talk to up to 270 medical students.

Both these mean more chances to spread awareness of cystinosis to the medical community.

So, thank you Beacon and Medics 4 Rare Diseases for setting it up; thank you University of Cambridge for giving us further opportunities; and huge thanks to Ana for your commitment, your willingness to go beyond the expected ….. and for listening. I’m sure you’ll make a wonderful doctor.

Will Newman
Trustee, Cystinosis Foundation UK

Links:

Ana’s Essay

https://blogs.biomedcentral.com/on-medicine/2022/02/21/an-eye-for-an-eye-how-comparisons-between-cystinosis-and-type-1-diabetes-can-reveal-health-inequalities-for-patients-with-rare-diseases/

Student Voice Prize 2021 Winners
https://www.rarebeacon.org/2021-winners/

BMC Blog
https://blogs.biomedcentral.com/on-medicine/

Medics4RareDiseases
https://www.m4rd.org/

Beacon
https://www.rarebeacon.org/student-voice-prize/

University of Cambridge School of Clinical Medicine
https://www.medschl.cam.ac.uk/education/courses/standard/course/

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