Community Shares: Did Your Doctor Talk to You About Shingles?
Last updated: November 2022
For many people, a shingles diagnosis will come as a painful surprise. But about 1 out of every 3 people in the United States will be affected by this common viral infection. People living with a chronic health condition that impacts their immune system can be at even higher risk of infection and long-term complications from shingles.1,2
We asked our community of patient leaders to share whether their doctors had talked to them about their risk of shingles. What they said might surprise you!
Planning ahead for shingles risk
A few of our patient leaders shared that their doctors proactively spoke to them about their risk of shingles due to their age or other health conditions that may increase their risk. This led some people to get vaccinated with the shingles vaccine, which can help decrease the risk of a shingles infection.
“Yes, my neurologist discussed it with me and even had me get the shingles vaccine, which seemed to help me until I got Covid,” shared a patient leader who lives with multiple sclerosis.
“I was told that because of my age and history, I needed to protect myself from shingles by getting vaccinated,” said a patient leader who lives with lupus.
Learning about shingles after being diagnosed
Many patient leaders learned more about shingles from their healthcare team after experiencing the painful rash for the first time. Some even had shingles multiple times before learning that they may be at higher risk because they live with certain health conditions or take medications that may weaken their immune system.
“It was not in the discussion PRIOR to my getting shingles, but has been annually since. I am more keenly aware of inflammation markers and managing my stress levels, too,” said a patient leader who is a cancer survivor and lives with heart disease and other health conditions.
“I wasn't told of my risk of shingles until the second time I got them. They said my lupus put me at higher risk, so they offered the shingles vaccine,” shared another patient leader.
Limited discussions about shingles with doctors
Several people shared that their healthcare team either never talked to them about shingles or gave them only a small amount of information. Some said they didn’t realize that they might be at higher risk of shingles or that it is possible to get shingles at a younger age. (A common myth is that only older people can get shingles).
“No one talked to me about my risks of developing shingles. I thought it was exclusive to older people and wouldn't have imagined being in my 30s and diagnosed with shingles. I wish more people knew that it happens to young adults, too,” said a patient leader living with diabetes.
One person with a weakened immune system told us, “My healthcare team didn't specifically speak with me about my risk of shingles, only that it is recommended to have a shingles shot while on the immunosuppressant meds I'm on.”
Tell us about your experience
What has your experience been like? Has your doctor talked to you about your risk of shingles? Share with us in the comments below!
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