After losing her late love almost twenty years, Susan Toms found herself face to face with the same rare disease, but doctors across the country turned her away. The typical pituitary tumor signaling this disease was nowhere to be found.
Most people have never heard of “acromegaly” but are all too familiar with the beloved animated film, Shrek. Interestingly, Shrek himself is thought to be modeled after Maurice Tillis, a famous French professional wrestler who had the disease. As demonstrated by his gigantic features, this disease causes one’s hands, feet, face and skull to grow, usually as the result of a pituitary tumor. According to the National Organization for Rare Disorders, acromegaly occurs in about 50 – 70 people per million, with three to eleven of every million developing the disease yearly. Diagnosis can be delayed as symptoms manifest slowly over several years with those affected and those around them often unaware of the changes.
After a two year quest involving several cities and physicians to no avail, Susan finally found a doctor willing to think outside the box. Like the others, he did not find the key typical “tell”, but he was willing to go the extra steps, uncovering the desired mystery the day before Thanksgiving 2024. Susan finally had something to be grateful for, and was cured of the insidious disease in January 2025. Many important take-aways from this journey, making it worth your time to listen. We hope to raise awareness on many levels, summed up by Dr. Kunal Mehta in the quote below. Join us for this incredible story!
“Susan’s persistence and careful observation of her own symptoms were vital. Her story is a reminder that when patients and physicians work together with open minds, even the rarest diagnoses can be uncovered. Acromegaly is rare, and when it arises outside the pituitary, it challenges even seasoned clinicians. Susan’s case shows the importance of listening deeply to patients and looking beyond the expected and finding them can change a life.”