Meet GlenTags: Living with Hypothalamic Hamartoma
I am Glen B Schallman , 59 yrs old was diagnosed back on March 1, 2002, by Dr. Rekate at the age of 43 with a 2.5 cm Hypothalamic Hamartoma, and 2 other very rare brain conditions (Unilateral Polymicrogyria and Unilateral Schizenchephaly). About 2 months after being diagnosed, I decided since I could not work anymore at a full time job. After leaving my job I decided to enroll in college and volunteer at Barrow Neurological Institute. I was suffering 10-20 seizures a day and sharp head pain non-stop for over 15 years. I continued to look for treatment and spent time meeting neurosurgeons in 4 different states with them all saying my HH is inoperable and untreatable. My HH is complicated due to the other two brain conditions and all have caused major problems with my daily life, but I have never given up. I continue to keep moving forward and advocating for rare brain conditions and epilepsy. I have been told that I am an inspiration to many others with HH and this encourages me to continue rare awareness of HH throughout the country by participating in epilepsy walks. Since diagnosed with HH, I have used seizure therapy cats that alert me and wake me up from seizures that are famous for their unique contribution to my life. My cat, Blake, received the 2016 Humane Award from the American Society for the Prevention of Cruelty to Animals (ASPCA). On November 1st 2017, Dr. Nakaji from Barrow Neurological Institue finally operated on my hypothalamic hamartoma. During this proceducte, he was able to detach part of the mass as well as remove a portion of the 2.5 cm mass. This operation has decreased my seizure activity to one or two a week. I'm happy to say that now I am enrolled in a local college taking courses for a psychology major and enjoying life a lot more with my 2 cats Blake and Maxwell Boo.