Why you need to know about Cushing’s Syndrome

It’s okay if you’ve never heard of Cushing’s. I hadn’t either until recently, when a close friend, Hannah, was diagnosed after two and a half years of struggling with the symptoms and no explanation. The process was extremely frustrating for her and her family which made dealing with the symptoms, treatment and eventual surgery even more difficult. There is a massive lack of awareness about Cushing’s in humans (you might associate it more commonly with a horse!) and this is what is preventing people from getting the recognition and treatment they need. One in 200,000 people are diagnosed with Cushing’s, but many people may be living with the disease without knowing. This is why it is so important to spread awareness and understanding.

So, what are the symptoms of Cushing’s? One of the most common is weight gain and obesity, causing a rounded face and a fatty deposit between the shoulders on the back. Due to the lack of wide spread knowledge this is a symptom that is usually misinterpreted and patients may be told (quite insensitively) by doctors to just lose weight. Many people also experience painful thinning skin, acne and skin injuries that take a long time to heal. Along with this it is common for people to experience anxiety and depression, due to the chemical changes caused by Cushing’s (even dogs diagnosed with Cushing’s have been seen to experience anxiety). This is only a few of the possible symptoms and certainly does not include everything, so you can see why, with little common knowledge of the syndrome, doctors and patients fail to link them together.

It takes, on average, eight years for a person to be diagnosed with Cushing’s. This is a shocking amount of time, and is largely down to a lack of awareness. The two plus years it took for Hannah to get a diagnosis meant years of symptoms which made studying and maintaining a normal teenage life difficult. She displayed the most common signs of Cushing’s, but doctors had not considered it as a possibility and consequently did not link these together quickly enough. Doctors accused her of secretly eating and one went as far as to claim that she was simply ‘obese’ and that a diet would fix everything. After issuing a formal complaint and being referred to another professional she was quickly diagnosed with Cushing’s, which shows how easier diagnosis would be if more people had the right knowledge. Spreading awareness of symptoms and facts about Cushing’s is a great way to reduce the diagnosis period so people get help quicker.

Cushing’s occurs due to abnormally high levels of cortisol which is a steroid hormone responsible for regulating several of the processes in the body. The most common cause of this is the growth of a benign tumour on the pituitary gland which then over-secretes the hormone ACTH, which then over stimulates the adrenal glands cortisol production (this specifically is called Cushing’s disease; Cushing’s syndrome refers to the symptoms of excess cortisol no matter the cause). This means that part of the course of treatment is surgery to remove the tumour. Suffering with untreated Cushing’s was so bad that Hannah was desperate for the surgery despite the risks, but this is brain surgery, and so was an intense process for her and her family. A lack of understanding of the physical effects of the surgery and syndrome means some people have made extremely insensitive remarks; just because a tumour is not cancerous does not mean that it is not an incredibly difficult experience. As Hannah said, following her surgery ‘I wasn’t allowed to breathe out of my nose for 2 weeks and wasn’t allowed to sniff or blow my nose for 6! Try doing that for a day!’

One of the most important things people need to know about Cushing’s is that it does not simply go away with surgery or treatment. It’s been six months since surgery and Hannah is only just beginning to feel like her old self again. Following treatment and surgery, patients can have abnormally low cortisol levels for years to come and some may never regain normal cortisol production. This means that patients will often have to remain on medication and are at risk of Acute Adrenal Crisis, which happens when someone with low cortisol experiences stress and can be life threatening. This stress can even be something as small as tripping and grazing your knee and would often need an injection of hydrocortisone and medical attention.  Many people and even some medical staff do not know this, which means time could be wasted when a person needs help and people don’t recognise the severity of the situation. On top of this, there is no guarantee that the tumour will not regrow! Cushing’s is not simply ‘cured’, it is something that someone has to deal with for life.

Cushing’s is far more common in women than men but research is yet to show why. Therefore, Cushing’s is an important issue to look at when we think about women’s health, especially on feminist platforms such as HerCampus. However, there are many other sources of valuable information out there for anyone wanting more information:

https://www.pituitary.org.uk/

https://pituitarysociety.org

https://www.addisons.org.uk/ (a secondary disease that can be caused by Cushing’s)

https://cushingsjourney.com (a blog written by a Cushing’s Disease sufferer)