Kristin Shares Her History with Acromegaly, A Growth Hormone Disorder

11/22/23 • 72 min

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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Meet the Stimpunks, Supporting Neurodivergent and Disabled Individuals Directly

The Stimpunks Foundation exists for the direct support and mutual aid of neurodivergent and disabled people. Oftentimes that can look as simple as just giving people cash, as studies have shown that no strings attached financial aid is one of the most effective ways to prop up individuals in need. But the Stimpunks are also building their website into an invaluable resource for their community, mining studies for relevant research and making that knowledge accessible for all, while also building a glossary of vocabulary that helps people engage with the latest research. Their organization is founded on four pillars: mutual aid including direct giving, creating a learning space for anti-ableist education, creator grants and supporting research efforts. In this episode of the Major Pain podcast we sit down with Stimpunks co-founder and creative director Ryan Boren and executive director Chelsea Adams to learn about their mission and the history of their organization. They also share a bit about their own health journeys, as they both live with a constellation of health challenges. For Ryan this journey has involved benign fasciculation syndrome (which is horribly misnamed considering the non-benign nature of the symptoms), neuromyotonia and stiff person syndrome. For Chelsea, she struggles with the combination of a traumatic brain injury (TBI), migraines, mental health challenges and body pain issues, while learning about her own neurodivergence. While this episode gives you a general overview of the Stimpunks organization, you can learn much more on their website at https://stimpunks.org. Major Pain is a proud recipient of a Stimpunks creator grant. You can request a grant to fund a disability/neurodivergence related creative project here: https://stimpunks.org/creators/

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The Link Between Head Trauma and Central Diabetes Insipidus

In 2005 Tracey was in a car crash that completely changed her life. She immediately developed slurred speech and an ice-pick headache right through the center of her brain. At the emergency room she was diagnosed with a concussion and sent home, but things only got worse from there. She developed aphasia and ataxia, falling constantly from balance issues and discovering that the words in her mind were not matching the words she would speak out loud. As if this weren't strange enough, she also started urinating constantly. It became impossible to stay hydrated, as Tracey was urinating upwards of 16 liters per day. After years of suffering and being ignored by doctor after doctor, Tracey took it upon herself to research the cause of her disabling symptoms. Her research led her to central diabetes insipidus (CDI), a form of diabetes that affects water regulation rather than blood sugar. When the hypothalamus at the back of the pituitary gland is injured, it can disrupt the production of a vasopressin (also called antidiuretic hormone), which regulates water balance and blood pressure. Although this is a known risk factor for brain surgeries, new research is linking the condition to head trauma. There may be millions of people suffering from transient or permanent diabetes insipidus without their knowledge. Tracey was close to death by the time she finally convinced a doctor to administer a water deprivation test which proved her condition. In this episode of the Major Pain podcast, Tracey talks us through her remarkable journey. Once she was finally diagnosed, a simple nasal spray treated her diabetes insipidus. The first time she tried the nasal spray, it felt like her brain was a dried up sea sponge finally exposed to water. Her ice-pick headache and slurred speech were gone within 20 seconds. Tracey is now applying her regained strength and energy to raising awareness of diabetes insipidus, so others won't have to suffer the medical negligence and ignorance she endured. Read Tracey's story on the NORD website: https://rarediseases.org/rare-resilience-traceys-story-in-honor-of-rare-disease-day/