Housebound mum-of-two could die due to rare illness – and NHS staff have ‘no idea what it is’

By Staff 7 Min Read

Janine Merryweather lives with super-rare Addison’s disease which affects her hormone system, often causing her to collapse. But most NHS workers haven’t even heard of the deadly illness

A mum hasn’t left her home for a year due to a deadly illness – but doctors don’t even know what it is.

Janine Merryweather is one of just 9,000 people in the UK living with super-rare Addison’s disease, which has consumed her life for more than a decade. But as well as her symptoms – which include thirst, tiredness, and depression – the mum-of-two deals with the added anguish of most NHS staff not knowing what it even is.

“There’s just literally no awareness whatsoever,” the 37-year-old from Nottingham said. “Everyone’s oblivious. It’s just pushed aside.” Janine claims she feels like “giving up” and currently hasn’t got any quality of life, a “shell” of her former self.

As a result of the illness, she regularly collapses and has lost her hair. 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.

“I’m not going to lie. I’m tired all the time,” she said. “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.”

Addison’s is a disease where the body doesn’t produce enough of certain hormones, such as cortisol (the stress hormone). It can result in fatigue, depression, and muscle weakness.

Janine’s health problems started in 2005 aged 18 when she was diagnosed with a tumour on her pituitary gland – the part of the body responsible for producing hormones. She said doctors had initially brushed off her symptoms of migraines and fainting as being due to her having recently given birth and gone through a break-up, Nottinghamshire Live reports.

But after collapsing, she was rushed to hospital where a scan showed her tumour. Although thankfully a benign growth, doctors opted to leave it, as surgery to remove it would have been too dangerous.

Over the next decade, Janine continued to suffer worsening symptoms, with the first signs of Addison’s appearing in 2013. She spoke of waking in the morning feeling like she “hadn’t been to sleep”, and regularly collapsing, which at one point saw her threatened with having her children put into care after doctors thought she had been drinking.

Her Addison’s diagnosis was later confirmed by a blood test, as well as secondary adrenal insufficiency which came from damage to her pituitary gland. The illness is treated with daily steroid injections. But any stress or other physical illness such as a cold can cause hormone levels to plummet, causing what’s called an “adrenal crisis”.

If left untreated, this can be fatal. In one scenario in 2017, Janine had gone to a walk-in centre fearing she was suffering a crisis. After being told to sit and wait twice, she eventually collapsed and was taken to hospital.

Seven years on, she says awareness of the illness has not come any further, and as recently as last month Janine was left waiting for an ambulance for hours after fearing she was suffering a crisis.

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.

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