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LIVING WITH HPP: What’s it like living with one of the rarest diseases during a pandemic?

 

One in seventeen people will be affected by a rare disease at some point in their lives.

The global pandemic has already worsened many challenges which face the rare disease community, upsetting day-to-day lives and consequently leading them to have to shield from society. To raise awareness of the challenges these people face, I Am Number 17 has been created by Takeda UK to make their voices heard, together with 13 patient advocacy groups from across the UK.

At the forefront of the campaign are 17 ‘Changemakers’ – people living with or supporting someone who has a rare disease. This includes Mel from Llanfor, Wales who lives with hypophosphatasia (HPP):

Mel was diagnosed with Hypophosphatasia (HPP) – a condition that causes abnormal development of the bones and teeth – when she was 52, after previously having been misdiagnosed with polymyalgia, rheumatica, and fibromyalgia.

From a young age, the condition affected her personal life, school and work, and relationships – causing problems with the birth of her two daughters.Mel discovered the benefits of having a creative focus during lockdown and saw the acceptance of remote working patterns as a positive for the disabled community...

“During the Covid-19 pandemic I have kept myself occupied by working in my art studio. Once down there I can lose myself when creating which has helped alleviate the worry. It has been great to have plenty of time to experiment and develop new techniques.

I think the pandemic has given a lot of people an insight into how those with disability live.  We are often restricted in what we are able to do and have developed ways to cope.  We are experts in planning our days or pacing ourselves. Many people have had to learn these skills when newly working from home. I feel sure that this will have helped to level the playing field for work opportunities for those with disability in the future as it has proven that even working at your own pace and at times suited to you it is still possible to get the work done.”

With the help of Metabolic Support UK, she has been trying to raise the profile of hypophosphatasia over the years as she believes there are many people with the condition who have just not been diagnosed yet.

Since November, the public, and the rare disease community – including people living with rare disease, patient groups and healthcare professionals (HCPs) – have been invited to get involved using #IAmNumber17, and all those interested in or invested in supporting the rare disease community in the UK, are invited to share their own experiences and show support for the campaign.

 


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