Sng27 Nov 2020 07:44
26th?November 2020
It is my understanding that the Covid-19 shielding advice for many adult Pompe patients is that they are at no greater risk from the virus in terms of symptoms, hospitalisation, ICU, and worse. However, I personally have grave concerns that the symptoms of LOPD would be severely exacerbated if their condition progressed to what has become known as Long-Covid; particularly, symptoms of muscle weakness, GI symptoms, brain fog, lethargy, fatigue, etc. I do worry that if anyone with LOPD and respiratory insufficiency was put on a ventilator, they would struggle to be weaned off again.
Whilst I would never suggest that people living with Pompe disease should ignore advice from their specialist medical teams, I do think that we should, as a community, be extra cautious during this pandemic; and indeed I do know that many are?deciding to shield as “clinically extremely vulnerable” adults despite reassurances from the NHS.
We hear constant news of progress with vaccine developments, and I do hope that our community can be protected as soon as possible; but the timing is still unclear. So, until we all feel completely safe from Covid-19, there are some very interesting treatments in the pipeline that offer protection from the virus and, more importantly, its long-term effects.
One such treatment that has been shown to be safe for other conditions (MS, COPD, Asthma) is?SNG001, being developed by a Southampton-based company, Synairgen plc (https://www.synairgen.com). The therapy is?currently under study in the UK and soon to have trials approved by the FDA in the USA. So, should you be unfortunate enough to contract Covid-19, and be concerned about its long-term effects, you may like to discuss joining a clinical trial or accessing the treatment through its?Managed Access Programme?(MAP). ??The MAP involves extra paperwork for your doctor, but you would be sure of receiving the treatment; being part of a clinical trial would risk being part of the placebo arm for the initial stage. ?
There is currently a placebo-controlled?home study trial?that you could join, where you would only meet the study team through a video-link. You would need to be aged between 50 and 64 to take part; take a look at their Facebook page if you’re interested:?www.facebook.com/covidtrialathome. Other phase 3 trials are due to take place around the UK and 20 countries around the world very soon. ?
If you would like to listen to an update from Professor Sir Stephen Holgate on this therapy, please follow this?link.?And for those interested in the science, the phase 2 study results were recently peer reviewed in the Lancet: “Safety and efficacy of inhaled nebulised interferon beta-1a (SNG001) for treatment of SARS-CoV-2 infection: a randomised, double-blind, placebo-controlled, phase 2 trial”, and can be accessed?here. ?
I do hope that you all stay safe and have no need for such treatments, but they are worth discussing with your GP or specialist
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