Long Covid: New research offers hope to those devastated by virus
In late 2020, life changed for Larisa Hockey. She and her three teenagers went from being outdoorsy people who enjoyed hiking, mountain biking and riding horses over their 300ha property near Gisborne to not being able to get out of a car and walk a few metres. The entire family had caught Covid-19 that September, and only Hockey’s husband escaped the post-viral syndrome that was slowly becoming known as long Covid.
“My son never got better and then my daughters and I slowly got worse and worse,” recalls the 49-year-old. “At first, we tried to keep going, which is what a lot of people do, but your body says no, you’re not doing anything else. The first year was spent mainly in bed. We had heart palpitations, dizziness and felt awful, like we had flu, all the time. We’ve gradually improved from there, but still have a long way to go.
“My son is now 19 and at university, but he has to be very careful with his energy and can’t exercise. My daughters are 15 and 17. They can’t work or study and spend most of their time resting. We can’t go for walks on the beach, attend church or other social gatherings. It’s a very isolating, scary condition.”
Hockey has coped thanks to the support of her husband and a wide circle of friends and family. Connecting with other sufferers has been helpful too, and she started New Zealand’s branch of the Long Covid Kids support group, which enables families with sick children ranging from toddlers to teens to share experiences and encouragement. She also belongs to a Facebook group that has led to the creation of a not-for-profit organisation, Long Covid Support Aotearoa.
“People from all walks of life have been brought together because of this condition,” she says. “The difference that has made for me has been immense.”
DIY support
As any patient will tell you, treatments for long Covid remain limited and recovery is slow and unpredictable. There are only a handful of clinics in New Zealand dedicated to the condition and for many sufferers, support from the long Covid community is something they have come to rely on.
Tech entrepreneur Jenene Crossan was an early adopter, catching the original strain of Covid-19 while in London in early 2020 and becoming one of the first New Zealanders to develop the post-viral condition. Since then, Crossan has found herself leading Long Covid Support Aotearoa and liaising with medical researchers who are focused on learning more about long Covid. It has become, she says, “a very bizarre side hobby to have”.
Three years on, such early symptoms as brain fog, fatigue and joint pain may be easing, but Crossan has been left with longer-term health problems including the autoimmune condition Hashimoto’s disease, which affects the thyroid gland that makes hormones that control the way the body uses energy.
“I’ve adapted to my life,” she says. “I’m in a very different place to where I was when I couldn’t do anything, when I was completely and utterly incapacitated. But I know that I’m never going to get back to the way things were. I have a long list of things that my body does differently now.”
Crossan’s experience, and that of others she has met through the support group, is that medical professionals often don’t have any idea what to do for their long Covid patients.