A Patient's Perspective

Family History, Social Media, and a Diagnostic Surprise


Am Fam Physician. 2015 Dec 1;92(11):980.

I was in my mid-30s when during one of my searches into my family tree, I entered my mother's unusual surname into Google to see if there were others who shared it. The search immediately led me to a mysterious post. Someone from a branch of the family I'd never known about, it turned out, was looking for my parents. By chance, I learned that this person was my half sister. We wrote back and forth, excited to have found each other. Not long afterward, she traveled from her country to visit me.

During the days we spent together, I noticed she had a scar on the back of her neck. It was exactly the same scar I had on the back of my neck. I'd had a surgery to remove a large hemangioblastoma from my cerebellum when I was 27 years old, and like my sister, I'd had some hearing loss in my right ear. My health problems for the past 20 years had never been diagnosed, but my sister's had. Needless to say, it didn't take long for me to be tested, and for the doctors to confirm that I had her genetic mutation. I had von Hippel-Lindau disease.

Since then, I've been treated at the National Institutes of Health, undergoing multiple surgeries to remove the cysts and tumors associated with the disease. Knowing what I'm fighting against, along with the professionalism and kindness of the agency's staff, has made it much easier for me to accept my illness. The Internet gave me a sister, and my sister gave me a diagnosis. Some blessings come in disguise!—j.a.


As family physicians, we are primed to consider the entire family in our holistic approach to patient care. We should encourage patients to arm themselves with information about their family history and work together to create a care plan emphasizing mitigation of genetically inherited risks. Social media and the Internet can be fertile resources for patients, especially for those who have been estranged from their families. Although patients may consult “Dr. Google,” physicians should base their care on a solid understanding of disease heritability.


For physicians

Wattendorf DJ, Hadley DW. Family history: the three-generation pedigree. Am Fam Physician. 2005;72(3):441–448.

Welch BM, Dere W, Schiffman JD. Family health history: the case for better tools. JAMA. 2005;313(17):1711–1712.

This series is coordinated by Caroline Wellbery, MD, Associate Deputy Editor, with assistance from Amy Crawford-Faucher, MD; Jo Marie Reilly, MD; and Sanaz Majd, MD.

A collection of Close-ups published in AFP is available at



Copyright © 2015 by the American Academy of Family Physicians.
This content is owned by the AAFP. A person viewing it online may make one printout of the material and may use that printout only for his or her personal, non-commercial reference. This material may not otherwise be downloaded, copied, printed, stored, transmitted or reproduced in any medium, whether now known or later invented, except as authorized in writing by the AAFP. Contact for copyright questions and/or permission requests.

Want to use this article elsewhere? Get Permissions

More in AFP

Editor's Collections

Related Content

More in Pubmed


Sep 2021

Access the latest issue of American Family Physician

Read the Issue

Email Alerts

Don't miss a single issue. Sign up for the free AFP email table of contents.

Sign Up Now

Navigate this Article