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This week’s blog delves into RareQoL and Rare Community Network founder Sondra Butterworth’s #WhoseVoice campaign. Sondra shared her motivation behind launching the campaign with us, and encourages everyone to get involved. Learn what the #WhoseVoice campaign seeks to address, and film your rare disease story for Rare Disease Day on the 28th February 2022. Join in the conversation. Whose voice is it anyway? Yours! Be heard. Be seen.

Fun fact: Sondra’s creative inspiration for naming the campaign came from the 1981 American drama film, Whose Life Is It Anyway? starring Richard Dreyfuss

“Too often we are not heard. Not because we don’t speak, but because you are not prepared to listen.”

– Sondra Butterworth, Community Psychology Specialist and Founder of RareQoL

Last week, we sat down to speak with RareQoL and Rare Community Network founder, Sondra Butterworth, who launched the #WhoseVoice campaign. The #WhoseVoice campaign is about representation, inclusion and diversity. Diverse voices are under-represented during community discussions, despite many of the issues being discussed disproportionately affecting these groups. Underrepresentation can be seen in discussions around the UK Rare Disease Framework Action Plans. The campaign helps these under-represented patients and their families be seen and heard by policy makers. Real change can only happen when every rare stakeholder is invited to the table and allowed to speak. #WhoseVoice ensures that every rare disease patient and family is heard regardless of their race, gender, sexuality or socio-economic background. The #WhoseVoice campaign makes people listen. It makes them empathise.

Sondra conducted a PhD study revealing that the Rare Disease Community often feel their expressed needs are not only unheard, but also forgotten. As Sondra said to us “It is incorrect to label our communities as hard to reach. I’m right here! Just ask!” Discussions around the UK Rare Disease Framework and rare diseases in general should include those who are outside of the usual demographic. It is a disservice to the community to ask the same people for their thoughts repeatedly. That only lends itself to the same voices being heard and biased outcomes. Policy makers must ask and listen to diverse voices to get the full picture of what is needed from the Rare Disease Community.

Sondra has worked closely with CEO Dr Lucy McKay from Medics 4 Rare Diseases (M4RD) on their project The Red Flags of Rare Disease. Red flags are symptoms or signs which raise the possibility of an underlying disease. Identifying the red flags of rare disease and teaching them to medics and other health professionals will help them know when to suspect a rare condition.

Getting an accurate diagnosis is one of the biggest hurdles in a patient’s life with a rare disease. Sadly, many people report not being taken seriously by the medical profession or diseases only being diagnosed after years of symptoms being explained away. In her PhD study, Sondra advocates for the use of Narrative medicine, which is a framework for medicine and health sciences that values individuals’ stories and experiences as integral aspects of the lived experience of health and illness.

Healthcare professionals focus on treating the physical symptoms of a rare disease, but fail to acknowledge the mental aspect of receiving a rare diagnosis. Sondra’s study showed that carers and parents are feeling depressed and unheard. There is no acknowledgment or consideration as to how a rare diagnosis affects a person’s mental health or wellbeing. The #WhoseVoice campaign seeks to highlight the need for mental health support, as well as the need for a more holistic approach to rare disease care and support.

It’s important to remember that not all rare diseases are genetic in nature, which means that they wouldn’t show up on a genetic test. In this case, medics must listen to a patient’s lived experience and socio-economic background to come up with a diagnosis. Like Sondra said to us, 5% of a rare patient’s life may be spent in the clinic, yet that is the primary focus for policy makers. The other 90% of a patient’s life, she said, is just living as a person who may want to pursue marriage, kids, a career and travel the world. Rare disease patients and their families are simply people living a life on their terms.

The #WhoseVoice campaign is turning the tables by showcasing under-represented voices and their stories. If you’d like to share your story as part of the campaign, you simply have to do the following:

Film yourself on TikTok or by holding your phone in the upright position and state:

• Your name
• Which rare condition you have
• What support (apart from surgeries and medicine) is missing from your life

Once you’re happy with your video, either upload it to TikTok or email it to [email protected]

Thank you for sharing your story!

If you’d like to learn more about the #WhoseVoice campaign, read the Whose Voice Is It Anyway Meeting Report now.

Discover the #WhoseVoice campaign!

by Blayne Baker time to read: 5 min
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