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It’s been 3 months, 17 weeks, 119 days, 2,847 hours, 170,830 minutes and 10,249,821 seconds since The 2020 Student Voice Prize officially opened for submissions on 5th October 2020. After many impressive submissions and patient group pairings, we finally have our four 2020 Student Voice Prize winners!

Please say hello and congratulations to:

Our 2020 Overall Winner

Our 2020 Runner-Ups:

The judges were blown away by the winning essays, which highlighted the impact of shielding during COVID-19 on rare disease patients, the diagnostic odyssey and the rare disease patient experience. It is the first year that every winning essay was written in collaboration with a patient group pair who spoke to the challenges that the rare community faces on a daily basis. The 2020 winning essays beautifully summarised their patient group pair’s lived experiences into an essay that was impactful, memorable and thought-provoking.

Read the winning essays in full now in either the Orphanet Journal of Rare Diseases or on BioMed Central’s blog and let us know your thoughts on social media!

2020 Overall Winner

Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic by Catriona Chaplin

Catriona was paired with The UK Mastocytosis Support Group who invited her to speak with three patients who live with mastocytosis and their families. Through their interview, Catriona learned their day-to-day experiences and how COVID-19 impacted them. Below are some of our favourite excerpts from her essay. You can read her essay in full in the Orphanet Journal of Rare Diseases here!

“I had never previously thought of myself as vulnerable” she said, describing coming to terms with a new imposed identity centred on her health. Being close in age, I contemplated the difficulty of reassessing one’s sense-of-self, particularly when the media portrayal of ‘shielders’ as frail elderly patients is so divorced from your own reality. The label of ‘shielder’ has very real impacts on identity, creating a sense of ‘otherness’ which may exacerbate feelings of isolation – already common amongst individuals with a rare condition.”

“Unfortunately, patients with rare diseases have generally had little explanation as to how their risk has been determined. Given such patients are often managed by multiple specialists, there is a greater chance of them receiving contradictory advice – an experience that could be minimised with improved implementation of coordinated care plans.”

“The consequences of shielding extend far beyond defining a person’s physical reality, having notable impacts on individuals’ identity and mental health. It has also brought to the fore many of the ‘normal’ challenges patients with rare conditions face: isolation, anxiety, weak support structures and poor access to reliable information.”

“Whilst Covid-related medication shortages have captured media headlines, they are simply another ‘bump in the road’ in on-going medication scarcities and funding restrictions affecting drug availability for rare disease patients.”

2020 Runner-up

The Journey of a Rare Disease Patient by Caitlyn Taylor

Caitlyn was paired with the Addison’s Disease Self Help Group who gave her insights into life as a rare disease patient. She heard first-hand accounts of the struggles rare patients face in getting a diagnosis and how they’ve had to cope with it. She discovered what might have helped Addison’s Disease patients along their diagnostic odyssey and crafted a poignant essay detailing what she learned as a result of her pairing. Below are some of our favourite excerpts from her essay. You can read her essay on BioMed Central’s blog here!

“D proceeded to explain to me that while only 5 people per million had the same condition as him, 1 in 17 people will be affected by a rare disease at some point in their lifetime (Rare Disease UK, 2020). My initial reactions to this fact were shock and then a sense of guilt. I entered Medical School to become a doctor, not just to pass exams. Was I letting down my future patients by not knowing more about rare diseases?”

“After finally being diagnosed with Addison’s Disease D was discharged from the military on medical grounds. The diagnosis that he had been searching for spelled the end of the career that he loved.”

“Prior to speaking to D, I was of the misconception that patient organisations were (as the name suggests) for patients and were only of limited value to clinicians. Now I see that a group of patients working together is extremely powerful, as patient experience is central to the coordination of the diagnosis and management of rare disease.”

“We, as the medical professionals of the future, have the ability to give rare disease patients like D the confidence to manage their conditions and change their own perceptions of illness.”

2020 Runner-up

What is Leigh Syndrome? If you had MS, I could help you by Molly Bowden

Molly was paired with a patient living with Leigh Syndrome who highlighted the challenges she faces with healthcare service, especially when seeking care from those who lack awareness of rare diseases. Molly was sadly informed of the lack of empathy and understanding by some in the medical profession, and walked away from her interview believing that the medical profession should focus on holistic care and establishing a strong rapport within a well-integrated multidisciplinary team. Below are some of our favourite excerpts from her essay. You can read her essay on BioMed Central’s blog here!

“What I found poignant, was that when she first developed difficulty walking at aged 7, the consultant who also treated her brother told her she was “attention seeking”. This dismissal resulted in a delay in diagnosis and consequentially a delay in treatment.”

“First experiences of the health service set the tone for a patient’s trust in doctors, and a lack of understanding of symptomology discourages patient’s from seeking out the support they need in future.”

“When she was just 23, she experienced an abrupt reduction in her vision following a chest infection which she described as: “like a power cut to the eyes” At the time, she visited an ophthalmologist to test her vision who bluntly told her: “If you believe in miracles get hoping. There’s nothing I can do.”

“I was saddened to learn of Fs overall negative experience of engaging with the health service; noting only three doctors whom she felt had made her experience a positive one.”

“Although we cannot all be masters of every subspeciality and every rare disorder that comes with it; a generally more compassionate approach when it comes to rare disease goes a long way.”

2020 Runner-up

Rare Disease Research: What challenges have presented in a global pandemic? by Sanjana Ashok

Sanjana was paired with The International WAGR Syndrome Association. She was introduced to a mother who has a son with WAGR Syndrome to learn first-hand the impact COVID-19 has had on his care. Sanjana was told of the shortcomings and positive aspects of the boy’s care throughout the pandemic, which she elegantly captured in her winning article. Below are some of our favourite excerpts from her essay. You can read her essay on BioMed Central’s blog here!

“It is now simple to understand why my university was suddenly reallocating funding and resources to COVID-19 research. It was and is, after all, the more pressing research problem to be solved. But what does this mean for all of the patients with rare, genetic conditions who were relying on the university laboratory for a diagnosis?”

“Patients for whom time is a limited resource may feel hopeless after finding out that a clinical trial where they could have received life-saving therapy has been cancelled. For a mother on the news who fought tooth and nail for her child to receive an experimental drug treatment, it has been disheartening to hear that the research has been suspended.”

“However, the financial problem for RD research lies on a deeper scale than in-person fundraising. It should not be the job of the patients and their families to fundraise money for their own treatment (which usually is priced at extortionate amounts). In a fair world, all RD research funding would be covered by the public sector.”

“Because of COVID-19, 6 in 10 patients have not been able access testing for their genetic condition either through genetic sequencing or other methods. This has a direct effect on patient empowerment as they are left feeling poorly informed, which is often compounded by misdiagnoses and poor co-ordination of care.”

On behalf of everyone at Findacure and M4RD, congratulations!

The winners of The 2020 Student Voice Prize are here!

by Blayne Baker time to read: 9 min