Housebound woman could die due to rare illness - but NHS staff have 'no idea what it is'

Portrait of blonde-haired Janine Merryweather at home
Janine Merryweather says she 'wonders if it's all worth it' when she wakes up to paramedics after an 'adrenal crisis' -Credit:Joseph Raynor/ Nottingham Post

A 37-year-old mum-of-two says she hasn't left the house for a year due to an illness which has consumed her life. But she claims most NHS staff don't have any idea what it is - and that her life is in danger because of medical professionals' lack of urgency when she's in danger.

Janine Merryweather was diagnosed with the rare condition Addison's disease - which affects just 9,000 people in the UK - in 2013, around eight years after first experiencing symptoms. Once an "incredibly social" person who "jumped at every opportunity", Miss Merryweather is now a shell of her former self and a "hermit" who is scared to be seen in public, having lost her home care business and become estranged from once-close friends.

She said: "I'm giving up. This is a life-threatening condition. If they're not going to treat it and I've not got a quality of life then what is the point for me moving forward? My GP is great but 111 receivers and the district nurses are not there. You rely on the NHS. I don't know what more I can do. There's just literally no awareness whatsoever. Everyone's oblivious. It's just pushed aside."

Miss Merryweather was first diagnosed with a tumour on her pituitary gland aged 18 in 2005, after suffering from worsening symptoms such as migraines and fainting. She says doctors initially brushed her off and told her the symptoms were due to the stress of her break-up and newborn baby - and it was only after she collapsed and went to hospital that a scan revealed the extent of the problem.

The tumour was thankfully benign, but, too dangerous to remove, surgeons opted to leave it and instead sent her away with medicine to help her symptoms. But over the next decade, she continued to suffer progressively worse symptoms - including waking up in the morning and feeling like she "hadn't been to sleep".

Janine Merryweather with Alicia Keys in front of a 'Set The World On Fire' tour background in 2013
Janine in her younger days, when she met Alicia Keys in 2013 -Credit:Supplied

She'd also continue to collapse - and one time, was found on her kitchen floor by a passer-by. But doctors thought she had just been drinking, and she was threatened with having her children taken away from her.

A subsequent blood test finally revealed the cause of her problems. Addison's disease and secondary adrenal insufficiency, which is caused by damage to the pituitary gland, affect the body's production of vital steroids such as cortisol and causes symptoms similar to a stroke when cortisol levels drop.

Addison's is treated with multiple steroid injections daily. But any stress or other physical illness, like a cold, can cause levels to drop significantly and lead to what is known as an "adrenal crisis".

The NHS website says "an adrenal crisis is a medical emergency. If left untreated, it can be fatal." Unlike an anaphylactic shock, where a suffer can stab themselves with an Epipen, Addison's requires a lengthy injection process which can take more than five minutes.

When Janine's levels are badly low, she will often be drowsy, dizzy, confused and unable to do it herself. As a result, she was advised when diagnosed to ring 999 or contact her local NHS service for emergency injections, and told that she'd be fast-tracked as an urgent priority if she ever needed it.

But in 2017, she went to the Platform One Walk-in Centre with symptoms of a crisis, having rung up beforehand to let them know she was coming and been told by a nurse that she'd be seen immediately. But when she got there, the receptionist told her to sit and wait twice before she eventually collapsed.

She was taken to hospital and the story featured on Nottinghamshire Live at the time. The company that ran the walk-in centre apologised for the mistake.

At that time, Janine was still managing to live as she had been doing. But seven years on, she says that she has almost no quality of life - and it's made all the worse when her condition is still, despite her previous issues, not understood by NHS 111 staff and nurses.

On March 29, feeling unwell and fearing a crisis, she'd rang 111 and a triage doctor was sent out to her at around midday. He told her another doctor would come to see her within two hours.

Janine Merryweather, 37, pictured at home in Nottingham.
Janine Merryweather, 37, pictured at home in Nottingham. -Credit:Joseph Raynor/ Nottingham Post

But this never happened. She began to feel worse and worse as the day went on and contacted her carer, who told her that she'd already requested a district nurse to visit but been told by the Nurse that her request wasn't being classed as urgent.

The carer contacted the nurses again, but still they told her it was classed as non-urgent, so an ambulance was rung at around 8pm. At 3am, Janine woke up surrounded by paramedics.

She assumes she had been "out of it" for hours and the ambulance had taken around seven hours to get to her. Luckily, she survived.

Janine called for change seven years ago when she spoke to Nottinghamshire Live, saying she feared a similar situation happening again. But it has - repeatedly - and she says awareness is still ridiculously low.

Her wrecked life is now "terrible", she says, having developed diabetes and alopecia as a result of her illness and having suffered a spinal injury when she collapsed while ice skating last year. She has carers visit four times per day, who help her prepare meals and wash, and had to give up her business in 2020 after catching sepsis.

She avoids going outside due to fear of becoming stressed and triggering a crisis, and avoids seeing people due to fear they could pass on illness to her, which could also cause her cortisol levels to drop.

"Life is terrible," she said. "I'm not going to lie. I'm tired all the time. It has a massive impact on everything: memory, eating, isolation. I can't even explain it. My whole life has changed. It's like my whole identity has been stripped."

Find out more about Addison's disease on the NHS website here.