The Cost of Cushing's Disease

Ashleigh was diagnosed with Cushing's Disease in 2018.
Cushing's Disease is very rare and it affects only one in one million people per year. It is extremely hard to diagnose and Ashleigh's symptoms were misdiagnosed for a number of years, leading to immense frustration, pain and depression.  We believe that this disease was developing over many years, perhaps even more than a decade.

 Cushing's Disease is caused by an overproduction of cortisol and may be located in the pituitary or adrenal glands. Symptoms include weight gain, particularly around the stomach, a fatty hump growth between the shoulders (buffalo hump), acne, anxiety, depression, weak muscles  and fatigue, and many more. 
https://en.wikipedia.org/wiki/Cushing%27s_syndrome 



In Ashleigh's case a tumour had developed on her pituitary gland and after months of blood tests, urine tests and MRI's it was finally diagnosed. Then the tumour had to be removed, which involved not only the neurosurgeon, but an ear, nose and throat specialist and an endocrinologist. 



This has had an enormous cost on her career and her health. She has had to take a year's leave without pay from her job as a teacher and there are many ongoing costs for specialists, such as the endocrinologist, exercise physiologist, dietitian, psychologist and continuing medications. She would love to resume her teaching work next year,  but is unsure at this stage when or in what capacity this will be. She has had to cease payments on the mortgage of her recently purchased first home. She has been receiving some Centrelink payment, but this has been a constant battle and it is a very minimal allowance, not enough to live on. The allowance has been cut off twice, which has meant that there was no money coming at all, which has been extremely stressful and depressing.

Recovery from the surgery has taken months, however recovery from the disease is ongoing and will still require lifetime monitoring.

Ashleigh had the operation to remove the tumour in February, 2019 but is has taken many months for her to gain the confidence and strength to go public and to realise that she does need help to continue to move forward.

Any funds raised will help with the cost of past and future medical bills and on-going treatment and will help to replace the money Ashleigh has lost through not being able to work for the last year. The situation is getting very serious financially and is causing much stress which is not good for her morale and for her health. We calculate that having this rare disease has cost Ashleigh more than $100,000 in lost wages and in medical bills and any help received would be very much appreciated.

Ashleigh has pledged that 10% of any donations will be passed on to medical research for Cushing's Disease in the hope that the diagnosis of the disease can be made easier and quicker. Undetected Cushing's Disease can be FATAL!

I am  Ashleigh's mother, Pauline Lynch and I am reaching out for your support to help my daughter cope with this debilitating disease and it's ongoing pain and distress.