One Woman’s Journey to Raise Cushing Disease Awareness

In 2006, shortly after giving birth to her second child, Kelly Knight’s life drastically changed. Debilitating headaches and rapid weight gain, especially around her neck and shoulders, left her feeling frustrated and helpless. Knight pursued doctor care—but, even more frustratingly, was repeatedly brushed off. 

As a 2018 article from the New York Times shares, doctors often downplay women’s health concerns. Women are more likely to be told that their pain or symptoms are psychosomatic, more likely to experience gendered discrimination in healthcare, and more likely to have to wait to receive treatment than their male counterparts. 

For Knight, her story unfortunately exists within this stubborn realm where women are not taken seriously about their health concerns. According to reporting from Vivien Leigh at News Center Maine, doctors told Knight that stress-related overeating was the root of her concerns. But after one year, one hundred pounds, and a host of new symptoms, Knight knew she’d have to take her health concerns into her own hands.

Without her personal research, she might never have learned that she had Cushing disease. 

What is Cushing Disease?

Cushing disease is a condition in which a benign pituitary tumor or growth causes the overproduction of adrenocorticotropic hormone (ACTH). When the body has too much ACTH, it also overproduces cortisol. Known as the “stress hormone,” cortisol regulates how your body responds to stress. Sustained cortisol levels lead to the symptoms of Cushing disease, such as:

  • Weight gain, especially around the face and trunk
  • Mood changes such as anxiety or depression
  • High blood pressure
  • Weakened immune system
  • Osteoporosis
  • Fatigue
  • Muscle weakness
  • Menstrual irregularities
  • Erectile dysfunction
  • Issues with memory and concentration 
  • Stretch marks
  • Heightened risk of bruising 

To learn more about Cushing disease, or access valuable resources to support you on your journey, head to the Cushing’s Support and Research Foundation.

Kelly’s Journey

As Knight surfed online for answers, she found that her symptoms could be caused by a pituitary tumor. She underwent multiple rounds of testing, as well as an MRI. Although the MRI showed a pituitary tumor, testing showed no reason why this tumor would form. Eventually, the Pituitary/Neuroendocrine Center at Brigham and Women’s Hospital removed the tumor—and further testing provided the concrete Cushing disease diagnosis. While Knight went into remission for a few years, her symptoms and tumors eventually came back. She’s had several surgeries since and seen improvements. While there’s still much to learn about Cushing disease, and while we’re still pushing for a potential cure, Knight feels grateful that she can raise awareness and empower others to advocate for themselves.

You can read more about Kelly Knight’s story at News Center Maine.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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