Living With Acromegaly—A Patient Perspective
Living with acromegaly can be challenging and likely has a big impact on your day-to-day life. It is important to know that you are not alone–there are other patients also living with this condition. If you have been diagnosed with acromegaly, it is important that you continue to take an active part in your healthcare and personal well-being.
Your healthcare provider is your best source of information about taking care of yourself and living with acromegaly. In addition, many patients seek connection with other people living with this condition, and these relationships can be empowering to remain proactive and move forward.
A survey, funded by Ipsen, was recently conducted with acromegaly patients, most of whom were active in an acromegaly support group. This survey was conducted to better understand the impact of acromegaly from a patient's point of view. Nineteen patients shared their opinions of and experiences with living with acromegaly, as well as their path to diagnosis and its impact on their lives.
Knowledge Is Power
Patients reported that they were interested in learning as much as they could about acromegaly in order to fully understand the condition and to further their proactive management of the disease. Patients were also interested in sharing this knowledge as educators or advocates to raise awareness of this condition.
For the patients surveyed, having a complete understanding of acromegaly and its treatment meant feeling empowered to help gain control of their condition.
Thoughts About Treatment
Although acromegaly cannot always be cured, it can often be managed with proper treatment. Many patients in the survey reported shock or surprise at learning they may need surgery or possibly may need to be on medication for the long term. Questions and concerns about available treatment options included:
Will the treatments work?
Will my symptoms go away?
What are the side effects?
Will I ever look like myself again?
Will GH and IGF-1 levels return to normal?
Patients were focused on the impact of the disease on their life, and they expressed a desire to get beyond reminders of their disease.
A True Patient–Healthcare Professional Partnership
In the study, patients reported a broad range of experiences with their healthcare providers—from trusting, collaborative partnerships with a team of specialists to poor relationships in which providers didn't listen or take their concerns seriously.
According to patients surveyed, a true patient–healthcare professional partnership consists of:
Recognition by the healthcare professional that the patient can be a source of knowledge and contribute to his or her care
The sharing of information between healthcare professional and patient
Flexibility of the healthcare professional to listen and work with each patient
The Importance of Support
The majority of patients in the study were empowered by relationships with other patients or through support groups. They reported how important it was to hear each others' stories, encourage each other, and become advocates for both themselves and other patients with acromegaly. Patients not connected to a support group reported feeling helpless and lonely.
Acromegaly can be a life-changing diagnosis with profound, ongoing effects on patients’ lives. Patients struggle with many issues they fail to openly share with their healthcare providers, but may discuss these issues more easily with other acromegaly patients. Better collaboration between patients and care providers could lead to increased patient satisfaction.
Read more about talking with your healthcare provider.
Get additional information about connecting with a support community.