MPs have given their support to a Londoner who suffers from lyme disease who is campaigning for greater awareness.
Rhiannon Collins, 23, of Erith, said she wants doctors to be more aware of the disease after claiming it took them 16 years to diagnose her condition which she said had “stripped away her dignity”.
In recent weeks dozens of MPs from all parties have expressed their support for the government to reassess NHS treatment of Lyme disease, with many calling for an All-Party Parliamentary Group to be formed.
The disease, a bacterial infection spread to humans by infected ticks, can be cured if caught early but if left untreated can cause heart problems, as well as swellings in joints leaving some people unable to move.
It also on the up with the number of UK cases of Lyme disease quadrupling in the 12 years to 2013, according to NHS data.
Michelle Donelan, MP for Chippenham, who suffers from Lyme disease herself, has offered to chair the group saying it needed to “raise awareness” of what is “a hugely complex area of medicine” and “look at a treatment plan for Lyme disease in the UK.”
Ms Collins, who contracted Lyme aged four while visiting a deer park in Kent, said at one stage her pain was “unbearable” to the point she thought she was dying.
“I wrote my will. I’d sort of accepted it. I thought that’s it, I’m done” she said “I was screaming, crying, sobbing. It was bone, joint and muscle pain. If anyone touched my skin it was absolute agony. I couldn’t get out of bed.
“I had severe neurological problems. I couldn’t remember my name I couldn’t remember my friends’ names.”
She said her childhood had been relatively normal but the stress and new environment of university triggered her rapid decline.
“We know stress affects the immune system and I was excited but I was stressed about going to university. I managed to go to one fresher’s event and then I majorly crashed” she said, “It was absolute massive pain. I couldn’t move and there was pain throughout the whole of my body.”
Ms Collins spent most of the next two years bedbound unable to do anything for herself.
“From being independent to not being able to wash myself or go to the toilet alone, they didn’t know what was wrong with me so they thought I was dying” she said, adding “I couldn’t swallow, I couldn’t eat, my mum had to feed me.
“No one at that age wants to be fed, no one wants to sit on a commode toilet.”
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It was only aged 20 that doctors finally diagnosed her with Lyme disease and though she is much better than she was three years ago, she says she still struggles to leave the house.
“Sometimes my friends come and drive me around with them, propped up with lots of pillows. But the last time I went to the pub was last Christmas and I was so ill afterwards for about four months. I completely crashed.”
Ms Collins, who has spent all her and her mother’s savings on treatment, hopes the parliamentary group will make a difference.
“I just want the cycle to stop. If doctors are trained adequately then Lyme can be caught early and it doesn’t have to get to this point. It doesn’t have to ruin people’s lives.
“If I could get help on the NHS if other people could get help on the NHS instead of people having to re-mortgage their homes or set up go-fund me pages, it would just be amazing.”
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