Dear NORD,

 

First, I am incredibly grateful for the work NORD does for people living with rare diseases. That is exactly why I am asking you to reconsider your position on psychological care for people with Cushings disease.

 

I was recently denied assistance for psychotherapy despite my endocrinologist providing a letter stating that these services are medically necessary and would be greatly beneficial to my recovery.

 

NORD has indicated that psychological symptoms are not directly related to Cushing disease. But patients living this reality know differently.

 

Mayo Clinic specifically recognizes depression, anxiety, irritability, difficulty controlling emotions, and problems with concentration and memory among the symptoms of Cushings Disease.

 

For me, this isn’t theoretical.

 

After brain tumor removal and while tapering hydrocortisone, I experienced profound changes in my emotions and behavior. I stopped eating. I couldn’t find joy in the things—or even the people—I love. My husband and I began couples therapy because I was behaving in ways that were completely out of character for me, sometimes without remembering it afterward.

 

Then came a Monday when my depression and emotional distress became so severe that I made plans to end my life. My husband intervened, and I reached out for help.

 

My therapists have personally observed changes in me as my steroid doses decrease.

My endocrinologist recognizes the need for psychological support as part of my recovery.

 

And I’m not alone.

 

In just one day, I connected with at least 35 other people living with Cushings disease who described significant psychological symptoms associated with their disease and recovery.

 

These aren’t simply “mental health issues” occurring alongside a rare disease. For many patients, they are part of what makes the disease and its recovery so devastating.

 

Psychological care is not a luxury. For some of us, it is part of staying alive.

 

I am asking NORD to:

 

* Recognize psychological and psychiatric symptoms as potential manifestations and consequences of Cushing disease and its treatment.

* Allow medically necessary psychotherapy and behavioral-health services to be considered for assistance.

* Evaluate these services case-by-case, particularly when a treating physician documents their medical necessity and connection to the patient’s disease or recovery.

* Listen to patients and emerging research as our understanding of rare diseases continues to evolve.

 

Rare diseases are rare—but the people living with them deserve to be treated as whole human beings.

 

Please reconsider your policy and help us access the care we need to heal—not just physically, but psychologically.

 

We are more than our cortisol levels.