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Home » Rare diseases » Why there should be more awareness of Cushing’s syndrome

Spontaneous Cushing’s, originating from within the body is rare, but occurs when too much of a hormone called cortisol (the body’s natural steroid hormone) is made. If the source of the problem is the pituitary gland, then the correct name is Cushing’s disease. Whereas, if it originates in the adrenal gland or anywhere else in the body, then the correct name is Cushing’s syndrome. Elaine and Mike reveal their life-changing experiences.

Elaine Banks

Elaine’s journey with Cushing’s is pictured above

What were your symptoms?
I gained around six stone and developed a round, red face. I wasn’t able to sleep and had chronic fatigue. I was breathless upon exertion, or even just walking upstairs.

Did diagnosis take a long time?
Yes. I’d had Cushing’s for probably 10 to 12 years without knowing it. The trouble was that clinicians treated all my symptoms — including diabetes, high cholesterol and high blood pressure — as separate entities. Much later, one doctor considered them all together and suspected Cushing’s. When diagnosis finally came, I could have jumped for joy because I at least knew what the problem was. I had an operation to remove most of the tumour in my pituitary gland and five weeks of radiotherapy. A year later, I went into remission.

How does the condition affect you?
Life is still challenging. I’m unable to work due to fatigue, and I have to pace myself and not do too much. Thank goodness for the Cushing’s UK group on Facebook, where 1200 members share their own experiences and offer each other support and advice. I believe it saved my life.

Mike Funnell

When were you diagnosed?
I was 28, but symptoms first appeared when I was about 16. These included extreme fatigue, weight gain around my middle, a round face with red cheeks, insomnia and depression.

How does Cushing’s affect you?
I’ve had three surgeries to remove the majority of the tumour from my pituitary gland, and I’m now in remission. But it’s been tough. There have been some small improvements in my blood pressure and weight, but I’ve now been diagnosed with gout, infertility, low testosterone, thinning of bones and an under-active thyroid. I was a care worker, but Cushing’s has forced me to change jobs — although I’m lucky my current employer is so supportive.

Is there enough understanding of Cushing’s?
Not in my experience. It took a decade or so for someone to work out what was wrong with me. Now I know that I’m not just “fat and lazy”, which some doctors have intimated in the past. There needs to be more awareness and info about Cushing’s, for medical professionals and the public.

This article has been commissioned and fully funded by HRA Rare Diseases. HRA RD have reviewed the content for medical accuracy only. The narrative and views expressed are the authors own. Any links visited from this site are not the responsibility of HRA Pharma Rare Diseases. UK/ENDO/0057 September 2020

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