Victoria Stone:
Living with long COVID
"I was exhausted! I gave up trying to find answers and tried to ignore and live with the new symptoms."
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Long COVID continues to affect a great many in our community. Victoria Stone, a supporter of Burnet, is someone who has suffered immensely.
Here you can read her personal experiences in her own words, taken from a submission she made to the House of Representatives Inquiry into Long COVID and repeated COVID infections.
The inquiry aims to build a picture of the health, social, educational, and economic impacts of long COVID and repeated COVID infections on individuals, families and the Australian community. The idea is that submissions will inform public policy recommendations.
In her own words:
Victoria's letter
"I am extremely grateful to you, and your committee, for the opportunity to make a submission to your inquiry into long COVID and repeated COVID infections, and thank you in advance for the work you are all undertaking to understand this growing issue.
"COVID has affected each member of my family to various extents. My husband and I have two children, who at the start of the pandemic were aged 1.5 and 3."
"My husband had a pre-existing health condition, an auto-immune kidney disease that makes him severely immunocompromised. The rest of us would have been considered ‘healthy’ and took no regular medication.
"In the very early days of the pandemic my husband came back from a work event attended by a large group of people from Milan, Italy, which was soon to become the epicentre for the European outbreak of SARS-CoV-2.
"Within a week we had all developed chesty coughs, I lost my sense of taste and smell completely for two weeks."
"12 days later my (then) 3 year old, Alice, was hospitalised with a massive seizure.
Above: Alice, Victoria's daughter.
Above: Alice, Victoria's daughter.
"From the emergency call, it was 22 minutes before the ambulance arrived, and a further 20 minutes before she was given the buccal that finally stopped her seizure.
"Thankfully her head CT was clear, and the seizure was deemed to be of unknown origin."
"My infection with COVID would be considered ‘mild’.
"My sense of taste and smell began gradually returning two weeks later and to all intents and purposes I was fine and fully recovered.
"Or so I thought … "
"I was taken to hospital with a suspected transient ischaemic attack (TIA). A TIA happens when the blood supply to your brain is blocked temporarily. The signs are the same as for a stroke, but they disappear within a short time. Often, they are only present for a few minutes.
"While all results were thankfully normal, the symptoms persisted.
"Ever since this first hospital visit, I have continued to suffer from chest pains, tinnitus, right sided neuropathy, including ‘glove arm’ and ‘glove leg’ – plus freezing cold right hand and right foot.
"After many months of trying to get answers for these unusual symptoms I was told by my GP that perhaps I was “just anxious”.
"I was exhausted! I gave up trying to find answers and tried to ignore and live with the new symptoms."
"In late 2021, I met our new GP who said “I believe you! I have four other patients who have the same neuropathy symptoms post-COVID”.
"It was life-changing to hear that, and although I still have no answers for the extent of the damage caused by that initial first wave infection, I am grateful to have a GP that is so knowledgeable about transmission and the risks."
Above: Victoria and her son.
Above: Victoria and her son.
"In November 2022, I was reinfected. My second infection exacerbated my long COVID and I was completely wiped out for weeks.
"The neurological and cardiovascular damage that I have endured over the past three years has been, and continues to be, incredibly disruptive to my life. I hope there will be no lasting damage to my body. "
“I know my story is not unique, there are millions of people worldwide who are also suffering with long COVID. We need to do more to protect everyone from experiencing long COVID and I hope that we will soon have access to better vaccines and treatments that can prevent it.
“The Burnet Vaccine Initiative is critical to the development of better vaccines that will be effective against new variants and help to prevent transmission. This will prove crucial in keeping people safe from long COVID.”
- Victoria Stone
Burnet also made a submission to the Inquiry into Long COVID and repeated COVID infections.
Findings in the Burnet submission include:
- between 500,000 and one million Australians have or have had Long COVID, and the condition may persist for at least two years,
- females, people aged 30-49, ethnic minorities and the socio-economically disadvantaged are at higher risk of Long COVID,
- a third dose (booster) of a COVID-19 vaccine reduces the risk of Long COVID by up to 50 percent, and
- currently, there is no evidence-based specific treatment for Long COVID
- Read about the Burnet submission here.
Above: Dr Andy Poumbourios
Above: Dr Andy Poumbourios
Meanwhile, in the Burnet laboratories
Back in 2021, Professor Heidi Drummer and Dr Andy Poumbourios and their team discovered a way to improve the effectiveness of COVID vaccines.
They introduced mutations into the COVID-19 spike protein that made it extremely stable. This stability resulted in antibody responses that were broadly effective against SARS-CoV-2 variants - in other words, a vaccine candidate with the potential to be a universal COVID vaccine.
With thanks to donors we were able to complete proof-of-concept studies. Now it’s time for the next step, and this is where we need your help.
"We are aiming to raise a total of $200,000 by the end of June 2023, which will entirely fund trials to validate the efficacy of the Burnet-engineered universal COVID vaccine candidate. From start to finish this process will take three months, and with your support, we aim to be finished by the end of 2023."
With successful validation completed, we can then approach potential partners to move on to human trials, regulatory approval and production. That means more effective COVID-19 vaccines ready for arms here in Australia and around the world.
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