Natalie Stokes, a 33 year-old single mother of one from Studley in Warwickshire is desperate to raise awareness of the debilitating condition which took her eight years to get diagnosed.
Natalie put on ten stone in weight in a mere two years, transforming her from an active twenty-something with a passion for horses and the great outdoors, to a 26-stone woman who struggled to get out of bed.
Although Natalie made multiple visits to her GP, the rarity of the condition meant that she struggled to receive an accurate diagnosis.
After years of being misdiagnosed, Natalie was referred to a specialist, based in Worcester, who gave her a diagnosis of Cushing’s disease.
Cushing’s disease is caused by a small benign tumour on the pituitary gland in the brain, which controls the amount and types of hormones released into the body.
Natalie explained: “For the first time I felt listened to. I felt relieved to be ill.”
Unfortunately, the disease not only affected Natalie physically but it also had a serious impact on her mental wellbeing.
“I felt a heaviness inside, I became severely anxious and would often have panic attacks. I became paranoid that people were judging me because of my size, and the way I looked.”
Throughout this initial period of illness, Natalie was training to become a counsellor but sadly the effects of the disease on her energy meant that she was unable to qualify, despite being top of her class.
“I am active on forums for people with Cushing’s disease and I feel that my counselling training has helped me to come to terms with it, and to offer advice to others who perhaps aren’t yet at the same stage.”
When discussing her son, Charlie, aged five Natalie said: “He is so loving, so helpful, he wants to help me, but I know it is important to let him be a child. Luckily we have my mum to support us, but she is also a full-time carer for my dad who has Parkinson’s Disease. Life can be challenging at times, but we are a close family who are always there for each other.”
In 2016, Natalie began her treatment at the Queen Elizabeth Hospital Birmingham (QEHB), having major surgery to reduce the size of her tumour. Surgeons accessed the tumour via a large cut made in the back of the nose.
One year on from the surgery Natalie said: “Since having the operation, I’ve lost nine stone. It’s made a big difference to my quality of life.”
Now, Natalie is backing the Queen Elizabeth Hospital Birmingham Charity’s plea to support research into pituitary illness. The Charity funds research into the condition, conducted by University of Birmingham Researcher Niki Karavitaki. The Charity also funds regular support groups for patients with pituitary illnesses.
Niki said: “We are really grateful to QEHB Charity for supporting our research into patients with pituitary illness. The more research we are able to carry out means patients with pituitary illnesses can be diagnosed and treated much quicker.”
Natalie added: “I am by no means out of the woods yet, and still suffer the effects of this disease on a daily basis, but I hope that with the support from specialists at QEHB, the future will look more positive. I would ask anyone who has ever experienced difficulty in reaching a diagnosis to consider donating to QEHB Charity, to support research into this lesser-known but debilitating illness.”