Robert Given was diagnosed with CASPR2 encephalitis at the age of 71. Up until that point he was running his CPA firm and was heavily involved in the community. Then suddenly his world was taken from him. Nevertheless, Robert feels he is lucky. Lucky to have been diagnosed quickly, lucky to have received proper treatment. But most of all lucky to be here with his wife and family and be able to give back. He is determined to raise AE Awareness as this will ultimately result in patients getting an early diagnosis with appropriately aggressive treatment, thereby improving outcomes.
Robert was interviewed about his battle with autoimmune encephalitis by Dr. Lisa Sanders, a writer for the New York Times Magazine. You can read the full article here. Many have already responded to this article, including Dr. Helen Egger. Her son has battled AE for a decade and is still being treated with intensive autoimmune medications that have enabled him to go to college despite this terrible illness.
One thing that stands out in Dr. Egger’s comment is that she believes her son would not be alive if he didn’t have a medical doctor family member or the incredible doctors at Duke and Mayo Clinic to support him. In other words, they were lucky, just as Robert feels he is lucky. By raising AE Awareness, the AE Alliance wants to ensure that ‘luck’ doesn’t determine the outcome of this disease, but that everyone can be properly diagnosed and receive treatment as soon as possible to achieve the best possible outcome.
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