Woman battled Lyme disease ‘for 16 years before being diagnosed’

A woman says she battled Lyme disease for 16 years before doctors finally diagnosed her with the condition.

Rhiannon Willow, 23, from Erith, was bitten by a tick when she was four years old and said doctors told her tests for Lyme had come back negative.

Now, after 19 years of living with health complications, her mother has launched a campaign to raise funds for treatments that could improve her life.

Rhiannon was an active and healthy child, but illness slowly took away her freedom.

She said: “It completely strips you of your dignity.

“You feel like your life has been taken away from you. You go from this super active person – down the gym, climbing mountains, running, shooting, archery to this young adult that spends most of her life indoors, under what feels like house arrest because your body physically can’t work.

“From this independent and smart student, to having to depend on people on a hourly basis, even at times to get up from the toilet, clean herself or help her eat.”

The bacterial infection spreads 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.

Rhiannon graduated from university with a 2:1 in photography, but because of her condition she did most of her course from bed.

She said: “You have to remain light hearted, you have to laugh and you have to maintain hope because this illness really drags you to the deepest parts of despair.

“It becomes so hard with the NHS not treating, or understanding, or even assuming initially that its ‘all in your head’, I can promise you that all I want, all I’m begging and wishing for in my heart and wildest dreams is a shot at ‘normality’ a chance to live my life.”

Rhiannon was finally diagnosed aged 20. Doctors had previously said tests for Lyme had come back negative, and suggested she may have chronic fatigue syndrome.

Rhiannon’s mum said she had the EM rash, a typical sign for Lyme disease that looks like a bullseye.

Debbie Collins said it all stared in a deer park in Sevenoaks.

She said: “She was a healthy girl, really active. She was bitten and she developed a rash, so I took her to the doctors. They said it wasn’t Lyme.

“She was 18 when she really crashed. She was in agony. She couldn’t get out of bed at some points.

Rhiannon was bitten when she four and has been in and out of hospital

“It’s scary as a mum, her joints dislocate, sometimes she can’t even lift a cup of tea. It has been really hard. It doesn’t matter what age they are, it’s terrifying, it really is.

“Lots of people with Lyme go a long time without knowing it. It’s a massive problem.

“The treatments we are looking at cost a lot of money. It’s a heart-breaking situation for all of us. We just long for a time when she will be able to walk a mountain again. We hope that day will come.

“Rhiannon deserves hope and funding can give us that. Treatment is very expensive and we simply cannot hope to get her better unless we can raise the funds.

“She shows what it is like to have an invisible illness and I am so proud of her.”

Ms Collins, a single mum, said the presence of Lyme disease was revealed through blood tests, carried out privately, and the family is now looking for funding to pursue private treatments.

So far nearly £1,000 has been raised towards a £25,000 goal.

Source: http://www.newsshopper.co.uk/NEWS/BEXLEY/15589812.Woman_s_plea_for_help_to_beat_rare_disease__from_tick_bite_which_went_undiagnosed_for_16_years_/

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