Eighteen-year-old Sharne Wood, from Staffordshire, was diagnosed with the blood disorder Aplastic Anaemia three years ago.
Severe Aplastic Anaemia is often treated with a stem cell transplant.
The student, who is due to start university in September, plans to keep shielding until there is more certainty there will not be another wave of COVID-19 in the UK.
Below is her written account of what life has been like and the struggles she has faced during the pandemic.
Living with Aplastic Anaemia is really hard at the best of times, but during a huge pandemic that’s taking over life as we know it, it’s an absolute nightmare.
The symptoms I put up with on a daily basis range anywhere from slight fatigue and maybe a headache, to full-on lethargic muscles, active dizziness, heavy nausea and being unable to leave my bed for the day. You never really know from one day to the next what you’ll be putting up with.
Whilst the pandemic remains the priority right now, the thousands of individuals suffering from blood cancers or blood disorders, like me, simply cannot be forgotten.
Our needs did not disappear when COVID-19 arose.
Patients with a blood cancer or a blood disorder are immunocompromised and more vulnerable to COVID-19, with studies finding 34% of blood cancer patients who contracted the virus did not survive.
This risk is substantially higher than in the general population. The NHS is also dealing with a cancer backlog and some of us are fighting to access treatment and the care that we so desperately need.
These last 14 or so months, I’ve struggled a lot more. Access to medical professionals has been less easy to access due to service closures and temporary holds on vital appointments, and medication has been so far out of reach due to the entire industry having to turn their focus to fighting the virus as best they can.
As important as that has of course been, people like me with medical conditions that we live with each and every day are still suffering – and now, even more so, as we’re left without the advice and support we really need and that ultimately, we’ve been used to being able to access.
Blood disorders can be life-threatening, and to feel so abandoned and deprived of the medical support you often so desperately need in a time of crisis is heartbreaking, and truly terrifying.
At the start of the pandemic, I don’t think I left the house, even just to go to the shops for food, for weeks. This was out of plain fear for my health.
My worry and anxiety have been absolutely through the roof and my wellbeing has suffered as a result. I’m going to keep shielding because I’m so frightened for my health. I just don’t feel safe.
You don’t feel like going outside because you’re just so worried about your health and you don’t know when you’ll feel safe again.
My health is something I worry about a lot as it is due to my severe anxiety surrounding the subject, so further shielding is something I feel I need to partake in a lot of the time.
Although I’ve secured a place at university for September, I feel it isn’t really a safe or viable option for me.
I have multiple concerns about that too; balancing out whether my health or my education comes first is something I shouldn’t have to do as an 18-year-old girl about to embark on the life ahead of her.
I’d be really disappointed if I couldn’t go to university as I’d feel like I was missing out on a huge adventure that I’ve been waiting to go on for years!
The pandemic has been an awful experience for absolutely everyone, but from a blood disorder sufferer’s perspective, it’s been particularly horrendous.
All I ask really is for our government to listen to and acknowledge us, as a group that feels invisible. We need more understanding of what it’s been like to go through this whilst already being vulnerable.
We’d like an apology; a promise to do better; a commitment to fund research on vaccine efficacy for immunocompromised patients. If we know our level of protection, we can behave accordingly.
It’s also extremely important to be able to access mental health support for vulnerable people who continue to shield.
Finally, we need an inquiry into what went wrong and how to compensate those who were forgotten in and amongst all of this, like me and so many others.
We deserve better.
Source: Read Full Article