Long Covid advocate, writer and blogger, Jasmine Hayer, joins covid:aid as Charity Ambassador

We are delighted that Long Covid advocate, writer and blogger, Jasmine is joining covid:aid as a Charity Ambassador. Here she tells us about her journey so far – you can find her blog My Long Covid Diaries and on social media @jasminehayer_

Hi, I’m Jasmine - a Long Covid advocate, writer and blogger. I caught Covid at the start of the pandemic (14th March 2020) and have been recovering from Long Covid ever since.

My Symptoms

I experienced over a dozen symptoms which worsened as time went on, including:

• Severe breathlessness

• Palpitations

• A ‘fiery’ sensation in my chest

• An inability to bend over

• Heart pain

As a result, I spent most of 2021 housebound with baffling relapses every few months.

My Diagnosis

Disbelieved for nine months by six GPs and a respiratory specialist, I was diagnosed as “medically fit” but suffering from the “trauma of having Covid” which eventually led to the onset of a devastating mental breakdown and signing off work.

Finally, I found an incredible specialist who was ahead of the curve and shockingly, “the trauma of Covid” turned out to be several diagnoses, including:

• A new type of post-Covid heart inflammation

• Abnormal blood flow in the lung

• A gas transfer level the equivalent to a lung disease patient

• Orthostatic intolerance & sinus reflex tachycardia

• Fluid around my heart

• ‘Post-Covid blood clot phenomena’ in my lung, which baffled my specialists!

Advocacy

Alarmed by the lack of public messaging about Long Covid, desperate to be heard and too breathless to speak, I started a blog called My Long Covid Diaries. My words became my voice when I didn’t have one.

I wrote about my diagnosis which - to my shock - went viral and sent the international research community into a spin!

With the help of the BBC, I was able to publicly shine the spotlight on micro-blood clots occurring in non-hospitalised patients, which defied radiology. I’ve since raised awareness about Long Covid via The Telegraph, Stylist Magazine, BBC News and BBC Asian Network.

Inundated with hundreds of similarly heart-wrenching stories from fellow sufferers, I felt an overwhelming frustration for our voices to be heard, especially whilst being bedbound.

This led to creating the nationwide project ‘The Hidden Voices of Long Covid Project’: a digital gallery of 200+ fellow sufferers stories, which I presented to the National Institute for Health Research (NIHR) and sent to Long Covid clinics.

What next?

I’m doing everything that I can to recover – fortunately I’m at the forefront of experimental treatment, still fighting to get into studies, connecting researchers and specialists, whilst sharing my story to help other sufferers.

I’m a patient advisor on the largest Long Covid patient trial, co-funded by the NIHR, leading on the stigma and inequalities faced by sufferers, with Dr Nisreen Alwan.

When I’m not doing that, I share what’s helped me, including holistic self-therapies and practical resources such as www.mysymptomtracker.co.uk which works to track physical or mental symptoms of various illnesses.

I’ve been deeply touched by the kind support that I’ve received from the global Long Covid community and allies such as covid:aid, who I look forward to working with as an ambassador.