Covid-19 is having a profound impact on everyone's lives. But actually the living situation hasn't changed all that much for people who are continuously homebound and excluded from everyday society due to debilitating pain. Except for the fact, that the only usual respite from the pain (physio, NHS treatments, pain relief, carers, visits from friends and family) have been largely taken away during Covid-19 lockdown, making day to day living more unbearable.
My name is Izzie and I am part of a group of volunteers helping out for Battersea Mutual Aid, offering practical and emotional support to more vulnerable neighbours. One of the ladies we've been having conversations with during isolation, and dropping shopping off for, is Leanora.
Leanora has a congential disability called Ehlers-Danlos syndrome which means the connective tissue in her body does not hold together properly. To put it in our language, Leanora is in chronic and agonising pain when not treated. The condition causes black outs, poor memory, excruciating head aches, not being able to hold down food and drink to name just a few symptoms. Leanora wants to wake up in the morning and feel like she has a purpose and is able to join in and participate in society - a right we all deserve. Her dream is to work in design - but each time a job opportunity has arisen, it has only lasted for a short while before the crippling pain has cut it short. For the first time, some of us are experiencing what it feels like to have these day to day luxuries, like going out and about and working, snatched away.
Leanora had started a new treatment with the NHS, pre-Covid, at the National Neurological Hospital (part of UCLH) and it was having a significant and unexpected benefit to her health. The first and the second treatment of this particular type are the most critical to the longer term success. Leanora had the first treatment, but due to the extended lockdown, UCLH has become a Covid centre and her second treatment has been cancelled. The Clinic is extremely busy, as you can imagine, as people travel from all over the country to receive treatment here. After the first treatment, the pain was becoming so tolerable that Leanora enrolled in a design class and was on the brink of going back to work (she even has a position lined up with a guy she met on her course!).
Due to the NHS clinic becoming a centre to help with the Covid efforts, Leanora won't get treatment for at least six months. Understandably, this has left Leanora at breaking point, as the first treatment has started to wear off and the excruciating pain is returning. The hope of returning to work and achieving some sort of quality life is being ripped away once again. There are still clinics doing the treatment around the country, but they are private and sessions need to be paid for upfront.
We are crowdfunding to try and get £2000 to pay for Leanora to have six months' worth of treatment privately, which could start as early as next week.
Any support would be hugely hugely appreciated, on behalf of Leanora, myself and everyone helping with Battersea Mutual Aid.