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Patient Stories
HES is a challenging condition to diagnose and treat. One of the best ways to learn about the condition is to hear about it from those living the disease. They can provide a unique insight into the condition, its impact, and how they live their daily lives.
Barbara S.
Passionate community advocate and developer of the first patient-run HES Web site. The Web site serves
as an important resource for those living with HES.
Read Barbara's Story
Dorothy Mae S.
Diagnosed with HES late in life and wisdom on living with the condition for 10 years.
Read Dorothy Mae's Story
Torry P.
Mathematics professor determined to lead an active life with HES.
Read Torry's Story
Rachel J.
Mother of two young boys discusses the ups and downs of raising a family while living with a rare condition.
Read Rachel's Story