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I've had long Covid for almost two years – so I’m sharing my DNA to help others

It’s been almost two years since I had Covid-19 and I’m still suffering with the aftermath daily. 

My energy levels are much lower than they used to be, I struggle to concentrate, I’m only able to walk once or twice a week for 10 minutes at a time due to heart rhythm issues and I have high cholesterol, despite eating a healthy diet. I even have scars from a Covid rash that still itch. 

At my worst point – in September 2020 – I was suffering from a total of 49 symptoms including poor eyesight, stomach aches, dizziness, racing heart rate and hair loss. 

I have since been diagnosed with long Covid, despite the fact I’ve never actually tested positive for the virus, although this isn’t uncommon; plenty of long Covid sufferers don’t have detectable antibodies as levels plummet over time.  

The reasons for my symptoms are still relatively unknown, which is why I’m taking part in a clinical trial, to help to improve knowledge of why some people are hit harder than others by the virus – and what the lasting implications might be. 

I believe I caught Covid in December 2019, although I didn’t know it at the time as the virus was still unheard of in the UK. My doctor has since said he also thinks I had it then by the sound of my symptoms during that period.

I had developed a very itchy rash on my legs, before I started feeling like I had the flu. I was out of sorts and exhausted, but didn’t need bed rest as I did when I’ve had the flu in the past. The rash remained for months but, other than that, I thought I had fully recovered after a few days and didn’t give it too much thought. 

Then, in March 2020, I realised that something wasn’t right. I had a persistent, dull headache, brain fog and felt almost like I wasn’t quite present a lot of the time. It wasn’t bad enough for me to book a doctor’s appointment, and anyway, this was during the first UK lockdown when the NHS was already under huge strain. 

My eyesight worsened for a few months, then improved, before getting worse again. I did see an optician but they thought I must just be tired. I was also very sensitive to light and noise – even to the sound of my own voice. It was a sensory overload, with pins and needles and hot flushes, too. 

Symptoms of long Covid

According to the NHS website, symptoms of long Covid include:

  • Shortness of breath
  • Heart palpitations
  • Fatigue
  • Join pain
  • Dizziness

Some weeks the rash was easier to manage: just blisters that would appear and then disappear in a matter of hours. Other times, it was so itchy that I booked an appointment with my GP, who prescribed strong topical steroids and hydrocolloid bandages. 

At this point, I was still mobile but I wasn’t going out much because it was too tiring – only a couple of times a week for very short walks. 

Then, in May 2020, on a walk in Battersea Park, my feet went completely numb. I could move them, but I couldn’t feel them. It was absolutely terrifying. It was a warm day, so I knew I wasn’t just cold.

Not sure what to do, I made my way slowly back home, took a long shower and eventually the feeling came back. I would learn later that peripheral neuropathy is a symptom of long Covid. I had never experienced anything like it before.

It started to affect all areas of my life, including my work. I’m a self-employed pain relief specialist and I continued to see my clients on video calls but I started to struggle with being able to concentrate. Once, I fell asleep in a meeting with a colleague, and I wasn’t able to read more than a few sentences at a time. I was forced to go part-time. 

By this point, I still hadn’t spoken to my GP, other than to get my rash looked at. I had no idea that all of these symptoms were linked to the illness I’d experienced in December the previous year. In fact, I thought they might be related to grief as I had just lost a close friend.

I didn’t suspect long Covid until June last year when a friend sent me a link to a British Medical Journal article that described almost all of my symptoms – including brain fog, fatigue, rashes, stomach aches, pins and needles, light and sound sensitivity – and I had an ‘a-ha’ moment. After this, I found a long Covid support group on Facebook and realised I wasn’t the only one experiencing a multitude of symptoms after what is quite often a very mild case of the virus. 

I asked to be referred to a long Covid clinic but, at this point in time, these clinics weren’t yet ready to see patients, so I was told to check in with my GP weekly instead. He too suspected long Covid and wanted to monitor my many symptoms.

In September 2020, I ended up in A&E with tachycardia (a rapid heartbeat) and a strange tingling, numb sensation on one side of my head. Around the same time, I started losing some of my hair and I decided to have my hair cut shorter – luckily, I have curls so I could hide some of the balder patches. 

Things kept getting worse. I lost a stone and a half (even though I was eating normally the weight was just falling off me) and I developed a painful condition called costochondritis, an inflammation of the ribs, as well as rashes over my whole body. The skin on my feet started to peel off, I had sore bones and joints, and aching, tight muscles. 

Gene that makes you more likely to die from Covid identified

Researchers have identified a gene responsible for doubling the risk of respiratory failure from coronavirus.

Some 60% of people with South Asian ancestry carry the high-risk genetic signal, a new study found.

The gene is also common in the European population, occurring in about 15%.

Read more here

Just a five-minute walk would result in me developing flu-like symptoms and so I didn’t leave the house for months. And just doing simple tasks at home would mean having to lie down for hours afterwards because I was so exhausted.

I tend to be a calm person but there were moments – such as when my heart rate spiked to alarming levels together with the brain tingling sensations, and I would be suddenly unable to form a sentence – when I didn’t know whether I’d make it. I’ve certainly had far more bouts of crying than I’ve ever had before in my adult life!

It wasn’t until January 2021 that I had my first appointment at a long Covid clinic, and I was given a proper diagnosis of Post-Covid Syndrome.

It wasn’t a relief as there was no doubt in my mind what it was – but it felt like progress to have it confirmed. 

At the clinic, they started treating me for the condition. For my mild respiratory symptoms, I have been put on a preventative inhaler and also use a reliever inhaler. Other tests are ongoing, though waiting lists for these are very long. I have a heart MRI next week and I am awaiting a neurology appointment.

But what exactly is long Covid? Scientists aren’t entirely sure yet, and uncertainty remains for people like me who continue to experience a huge range of perplexing ongoing symptoms (one recent study identified over 200 different symptoms). 

Sufferers of this debilitating condition can be found in all age groups, though the prevalence of self-reported symptoms is estimated to be highest among 35 to 69-year-olds and among women. I’m 45 years old. 

I’ve come to learn that, as a woman of Asian descent, I’m grossly underrepresented in genetic research, which informs how we treat diseases. Most of the available pool of genetic data – around 80% of it – comes from people of European descent. 

This so-called ‘Eurocentricity’ is a problem because people of European ancestry only make up around 16% of the global population. There’s also a gender imbalance: historically women were seldom included in clinical research and there is still a huge divide.

All of this makes my DNA, and my experience, extremely valuable to science. And so, I’m taking part in two studies that aim to improve the outlook for sufferers of long Covid. 

The first is Sano Genetics’ Genetics of Long Covid study, which is exploring genetic predisposition to the condition and hopes to identify new treatment options. So far, links have been made between genetics and Covid-19 infection risk and severity, but researchers need to go further to understand why some people experience long-term symptoms, and others recover quickly. 

I’m also collaborating on UCL’s Cicada study, which is ‘exploring the pandemic experiences of people with a long-term condition or disability from ethnic minority groups, with a focus on health and social care.’

I strongly believe that those of us who are underrepresented in research should come forward to take part, knowing that this may help not only us but generations of people to come. It’s not OK for studies to be biased towards Caucasian men anymore. If we want better access to care, and to personalised medicine, then we need to step up, be seen and heard. 

The challenge we face is that with different people experiencing a different combination of many fluctuating symptoms, from month to month, week to week, and sometimes day-to-day, there is no straightforward one-size-fits-all treatment. 

Thankfully, although I still get relapses, my energy levels are starting to improve and I’m able to work part-time. I’m a lot better now than I was but I have to take it easy and listen to my body. If I push myself a little too much one day, I’ll feel the effects for days after.

By taking part in these studies, I hope that I can help make a change, to help get appropriate healthcare out there for everyone, and help improve the outlook for many. I’d urge anyone else reading this, particularly those from underrepresented groups, to do the same. 

Change doesn’t happen by itself: it’s time to engage.

To take part in Sano Genetics’ study, you must be a UK resident aged 18+ that currently has Covid-19 or long Covid, or has recovered from them. Sign up on their website here to receive a free at-home DNA testing kit.

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