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Cushing's Awareness Day

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by Catherine Van Bergen (subscribe)
I'm a freelance writer who lives on the Bellarine Peninsula. I enjoy finding new things to see and do in the beautiful area that I live in. I'm also a booklover- see my reviews at acomfychair.com/profile/52/
Event:
Cushing's Disease. Until I was diagnosed with it a couple of years ago, I had no idea that this rare disease even existed.

Who could blame me?



Affecting only 10 to 15 people per million every year, Cushing's Disease is not a well-known condition and most people only come across mention of it in medical journals. Difficult to diagnose due to its many symptoms (which can be attributed to other health problems), a patient with Cushing's Disease can often wait for up to 10 years before a proper diagnosis is made.

My own journey took about five years, with another year added on while I waited for the surgery that would make me 'healthy' again.

Now, almost a year after said surgery, I have discovered that there is an Awareness Day for Cushing's- April 8th.

Yes, a day.

Not a month for awareness, like patients of Endometriosis or Motor Neurone Disease get.

A single day.

That's why I want to make it known that this day exists.

That this horrible, rare, endocrinological disease exists.

If this awareness can help even one person to reach a quicker diagnosis, and as a result, a better way of life, then I will count that as a success.

Cushing's Disease occurs when the body produces excessive amounts of a hormone called cortisol. This hormone is responsible for maintaining blood sugar levels, protecting the body from stress and suppressing inflammation. Produced in the adrenal glands (which are found at the top of the kidneys), cortisol production is triggered by another hormone called adrenocorticotropic hormone (ACTH) which comes from the pituitary gland (found at the base of the brain). Together, the adrenal and pituitary glands help to regulate the body's development, metabolism and mood, among many other things.

Cushing's Disease usually occurs when a benign tumour forms on the pituitary gland, causing an excessive release of ACTH, and therefore, an excessive production of cortisol. Over time, this extra release of cortisol in the body causes a range of harmful symptoms, including massive weight gain, high blood pressure, a weakened immune system, thinner skin (leading to stretch marks and easy bruising), a higher potential for diabetes, a higher risk of osteoporosis and many other health concerns.

Cushing's Awareness Day
Signs and Symptoms of Cushing's Disease.https://www.researchgate.net/figure/Signs-and-symptoms-of-Cushings-disease_fig3_309412643


Because the range of symptoms is so wide (and some people don't experience all of them), it is often difficult to pinpoint Cushing's Disease as the cause- particularly when medical professionals focus on only a few of the symptoms. If a case of Cushing's is diagnosed, it is sometimes only as Cushing's Syndrome- which is a general state characterised by excessive levels of cortisol in the blood. While Cushing's Syndrome is also serious, it isn't quite as rare or difficult to treat as Cushing's Disease. Often, the tumour that occurs in Cushing's Disease is so small that unless someone is specifically looking for it during an MRI scan, it can easily be missed, which leads to further problems (and even more tests) in the long run.

I was lucky enough to be referred to a fantastic endocrinologist by my GP- she thought my abnormally high blood pressure was due to a thyroid problem and wanted a second opinion. As it turns out, my endocrinologist had different suspicions (especially when she took into account my other symptoms) and over a period of several years, ensured that I undertook a large range of tests (both invasive and not) to determine the cause of my problems. Her persistence paid off- I had neurosurgery to remove a pituitary tumour in May 2019, and if it wasn't for her, I'd still be suffering from Cushing's Disease.

My journey is far from over- I will have to have endocrinology appointments for the rest of my life, with the possibility that the tumour will return. But in the meantime, I want to take the opportunity to raise awareness of this condition.

Cushing's Awareness Day
Me: The first image was taken in the years before I got Cushing's Disease. The second image is one of the rare few photos taken while I had Cushing's Disease (and I wasn't even at my peak weight yet!). The third image is the most recent photo of me, taken about 11 months after surgery to remove a tumour from my pituitary gland


Even though it is rare, and nowhere near as well-known as other serious health conditions, Cushing's Disease (and Cushing's Syndrome) should still get the recognition they deserve. I suppose the fact that someone has allocated Cushing's an awareness day goes some way to making this a reality, but only if the message gets across about its existence.

Please, if you do only one thing today, make it this.
Look at the symptoms diagram in this article. Google 'Cushing's Disease' and read real-life stories and accounts of people who have experienced it. Raise your own personal awareness of the disease. Every little bit helps to contribute to a greater recognition of Cushing's. And hopefully, that awareness will one day help someone who has all the symptoms but doesn't know what they meanů
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Why? To raise awareness of Cushing's Disease
When: Wednesday 8th April, 2020
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