Patient Story Editorial - Traci
With Acromegaly, You Are Your Best Advocate
“Acromegaly is a frustrating disease. And when it comes to breakthrough symptoms, doctors may not know or validate the concerns we have.”
In her job as an asthma educator, Traci spent her time advocating for patients and encouraging them to be proactive and ask the right questions with their doctors. So, when she received her diagnosis of acromegaly, Traci was prepared to be her own advocate in getting the best care and treatment she could; a philosophy she continues to embody 11 years later.
Having effective conversations with your health care team and knowing what questions to ask are crucial parts of managing any condition. But that’s not always as easy as it sounds. People living with acromegaly can often find it hard to talk about the extent of their symptoms to their doctors. It’s important that patients be open about their experiences with symptoms and treatment and that doctors be understanding and willing to change course if a treatment is painful, inconvenient, ineffective or the patient is not happy with the treatment for any reason.
Acromegaly patient and trained asthma educator, Traci, knows this all too well. At the beginning of her journey with acromegaly, Traci met with three separate doctors when experiencing fatigue and spontaneous lactation before finally receiving an MRI that revealed a pituitary tumor, which led to a blood test that confirmed acromegaly. As an educator, Traci taught patients how to ask the right questions and advocate for themselves through the mantra of “Fix it, advocate it, do it.” So, when she received this diagnosis, Traci was prepared to put her own training to the test and be her own advocate in getting the best care and treatment she could.
“My background definitely helped me be my own best advocate throughout the whole process. Working with asthma patients and encouraging them to be proactive and ask questions taught me that I had to do the same thing to get the right treatments and answers I needed to manage my acromegaly.”
After her diagnosis, Traci went to work researching her options and found a pituitary center in Georgia where several surgeries similar to the one she needed had been performed. Because the tumor was so close to her carotid artery in her brain, the surgeon opted to leave part of the tumor behind. Following her surgery, Traci’s endocrinologist explained that she would have to stay on medication to maintain control over her body’s growth hormone levels.
“I appreciated that my doctor explained to me all my treatment options so I could be part of the decision-making.”
However, even on an injectable treatment, Traci’s fatigue persisted. She continued researching and discussing all available treatment options with her doctors.
“What I’ve learned through this journey is that I can’t give up. I’ve just got to keep looking for the right person who is going to listen and work to help me get through whatever issues I have.”
For acromegaly, it’s important that patients understand as much as they can about their illness and come prepared to doctor’s appointments with any questions that they may have. Only patients truly know what they’re feeling and the extent of their symptoms, so being their own advocate and voicing those concerns to their doctors is crucial to receiving the right treatment for them.
“I encourage people with acromegaly to find a doctor who digs deeper—who looks beyond the ‘numbers’ and asks how you’re doing and truly listens. When you have someone willing to ask questions, they can open the doors to other physicians or specialists who can offer a fresh perspective.”
This is Traci’s personal experience living with and managing acromegaly. Other people’s experiences may differ. For more information and resources for managing acromegaly, visit: https://acromegalyally.com/talking-to-your-doctor/.