A photo of podcast guest Kristin who discusses acromegaly

In her early 20s, Kristin’s body started exhibiting changes that she could not explain. She started gaining weight mysteriously, noticing that her hands and face were growing larger. Over the years this mystery intensified, even her tongue and internal organs were growing. Kristin sought help from many doctors, but was repeatedly accused of being an obese hypochondriac. Doctors were quick to lay blame at Kristin’s feet, while none recognized the rare disorder that was hiding in plain sight.

Kristin has acromegaly, a disease caused by a tumor on the pituitary gland that produces growth hormone. When this disease develops in childhood it leads to extreme height, and is called gigantism. But when an adult develops this tumor they do not gain height, instead the bones of their hands, face and feet expand, causing significant changes to their appearance. Since these changes happen slowly it usually takes many years to get a diagnosis, and unfortunately it took Kristin over 20 years to get diagnosed.

In this episode of the Major Pain podcast, Kristin discusses her decades long journey with acromegaly. After years of searching for an explanation for why her body was changing so dramatically, she met a neurologist who took one look at her face and immediately knew what was happening. Kristin soon learned that her pituitary tumor had been growing for so long that it was wrapped around her carotid artery and wouldn’t be operable if it grew any larger, which could be fatal. She rushed to emergency surgery, and the tumor was removed successfully. Suddenly relieved from an excess of growth hormone, it took years for Kristin’s body to adjust. Although this process has been extremely difficult and painful, Kristin is grateful to have survived. It’s been over a decade since her surgery, and she has spent that time cultivating a new relationship with her body, focusing on self-love.

Kristin mentions an acromegaly support group on facebook, which can be found here: https://www.facebook.com/acromegaly

During the introduction of this podcast Jesse discusses his disability attorney, who you can find at https://wadisability.com/

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This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/


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