My Story

This page will have a list of personal stories from individuals who have contacted HDRI and are believed in principle, since there is no test, to have this terrible disease. Each story is given anonymously as to protect their personal identity and is written in their own words. HDRI merely publishes this so that others can try to understand what it is like to have the disease while being unable to find help with their problem. If you know of somebody who may have this disease please ask them to contact us for an interview to see if we might be able to share their personal story.