Monica Cufino shares her experience living with acromegaly, a rare condition caused by a growth‑hormone‑secreting pituitary tumor. She describes the early warning signs, the long road many patients face to diagnosis, and why early detection can prevent serious complications, including vision loss and organ damage. The discussion covers hallmark symptoms, diagnostic testing, treatment options, and the practical realities of managing a rare disease. Monica highlights advocacy tips, resources for patients and clinicians, and how friends and family can support someone with acromegaly. Follow Monica on LinkedIn, Facebook, and join her Facebook group. Follow Erin's company, Black Point Insurance, on Instagram here. Follow Erin on Facebook here. Five key takeaways 1. Acromegaly is rare and often under‑recognized, with only an estimated three new cases per million people per year in the United States. 2. The condition is usually driven by a pituitary tumor that causes excess growth hormone, leading to changes in hands, feet, facial bones, soft tissue, and internal organs. 3. Diagnosis often takes close to a decade, which increases the risk of joint damage, spinal problems, and serious complications such as vision loss. 4. Standard treatment includes high‑volume pituitary surgery, medical therapy, and in some cases radiation, followed by long‑term monitoring of hormone levels. 5. Support communities and specialized centers play a key role in education, access, and financial assistance for patients. Timestamped overview 00:00 – Introduction to Monica, her background, and how a rare disease intersected with an active, social life. 05:00 – What acromegaly is, how rare it is, and the distinction between childhood gigantism and adult acromegaly. 11:00 – Internal effects: organ and soft‑tissue growth, joint strain, and why many women present around menopause. 17:00 – Early signs in Monica's case, including snoring, calf enlargement, and shoe and ring size changes. 23:00 – The pivotal ENT visit, CT scan, and discovery of a pituitary adenoma. 29:00 – Risks of delayed diagnosis, including rapid tumor growth, potential blindness, and severe back and joint pain. 35:00 – Treatment pathways: high‑volume transsphenoidal surgery, IGF‑1 testing, medical therapy, and radiation. 43:00 – Daily management: injections, medication side effects, travel logistics, and impact on quality of life. 50:00 – Emotional and social effects, body‑image changes, and mental health strain. 56:00 – Why early hormone testing and a referral to an endocrinologist can shorten the path to diagnosis. 1:02:00 – How acromegaly‑focused and pituitary‑focused organizations support patients, providers, and research.
