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Adjusting to life with Cushing’s disease

rare diseases cushings disease
rare diseases cushings disease

“I wouldn’t wish this on my worst enemy, but at the same time, it has brought me as much as it has taken away,” says Sammy Harbut, reflecting on life with Cushing’s Disease.

It was back in 2007 that Sammy’s sister urged her to visit her GP after a simple bump left her foot black and badly swollen. Tests came back inconclusive, but her health began to deteriorate. She put on weight and, after suffering five miscarriages, her periods stopped. She bruised easily and was always tired.

“I had checks on my liver, kidneys, heart, blood, respiratory and reproductive systems and they all came back clear,” says Sammy. But by January 2010 she could barely manage the five minute walk to collect her daughter from school.

Search for diagnosis 

Whilst Sammy had seen countless specialists, no one had looked at her condition holistically. So, when a colleague put her all symptoms into a search engine, Cushing’s Disease came back.

Doctors confirmed that Sammy had a tumour on her pituitary gland, causing the production of too much cortisol – the hormone essential in regulating processes such as the metabolic and the immune system. It had to be removed.

“Having been used to waiting for months for hospital appointments, in July 2010 I asked my endocrinologist if the operation would be before Christmas, to which he replied, ‘You’ll be dead by Christmas – you’re producing enough cortisol for yourself and another 10 people.’”

Life with Cushing’s will always have its challenges, but is worth it all the same.

Reality kicks in

It was then that the seriousness of Sammy’s condition hit home. On 12 October 2010 she underwent the surgery. “That day changed my life forever, and the road to recovery has been a long and arduous one at times,” she says.

Sammy went from producing too much cortisol, to producing none at all. She now has to take steroids three times a day to stay alive, often gets fatigued and feel unwell, but Sammy has faced the whole ordeal with unrelenting optimism.

Since surgery she has done a parachute jump (pictured), gained a university degree, retraining as an occupational therapist and has many new friends living with Cushing’s who she affectionately calls “Cushies.”

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