3 Types of Assistance That Would Benefit People With Cushing’s | How a Patient Support Program Would Help the Cushing’s Community

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Since battling a pituitary tumor and Cushing’s disease, I have noticed that many other patients share similar concerns about types of support that are limited or unavailable.

I believe there should be a program for Cushing’s patients that addresses these issues and provides us with assistance. Three key areas this program should focus on are finances, mental health, and general wellness.

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Finances

Before my own diagnosis in 2015, I was weeks away from an advancement in my career. However, I was struggling to manage symptoms such as daily headaches and migraines, low energy, and back pain. My body’s unpredictability made it difficult to work.

Demanding jobs can be a recipe for disaster for those dealing with Cushing’s, as the stress may aggravate symptoms. I was effective at my job, but at what cost?

Still, it’s important to have some type of income. If a Cushing’s patient is the sole breadwinner in their home, their family may face financial difficulties if the patient becomes unable to work or loses their job. This could also result in the loss of employer-sponsored health insurance. Medical bills can be expensive and accumulate over time, creating even more financial stress.

That’s why I believe our community would benefit from some type of financial assistance program that would help us cover expenses during treatment and recovery. It would also be helpful to have assistance applying for disability insurance, if needed.

My wife and I experienced many financial struggles during my illness and recovery. I only had about six weeks of paid time off from my job. She was strained, so I decided to return to work early to provide for my home. However, I wasn’t in the right place mentally or physically to return to the type of work I was doing, which led to a major setback in my recovery. Receiving financial assistance during this difficult time would have taken a lot of pressure off our family.

Mental health

I believe mental health services should also be provided to patients. Based on my own experience, meeting regularly with a mental health professional who specializes in Cushing’s or general pituitary issues is crucial, both before and after treatment. Patients often experience fear and anxiety before transsphenoidal surgery, and a range of emotions afterward. This is especially true if our recovery takes much longer than we anticipated.

General well-being

Because recovery can involve many adjustments and lifestyle changes, having a wellness coach to guide us through the process would be beneficial as well. For instance, it’s important to know which activities can help improve quality of life, as well as how nutrition can aid us in our recovery. To be clear, I’m aware that weight gain is a common symptom of Cushing’s and am not suggesting that weight loss should be our primary focus. Improving our general well-being through diet and exercise can simply help us better care for our body and achieve optimal health.

I can’t overstate how beneficial these types of assistance would be to the Cushing’s community. A patient support program could greatly improve our overall quality of life.


Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.





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