Debbie’s HH Journey
My name is Debbie Menzies, I’m 60 years old, and I survived an undiagnosed Hypothalamic Hamartoma for 55 years. Born Deborah A. LeBorgne, the youngest of six children, I was raised in Westbrook, Maine.
My youngest memories are as a 5-year-old, very happy, well-adjusted, and outgoing little girl. Cruelly, those memories soon transformed themselves into those of a confused, scared, anxious, and troubled young girl at age 8 or 9, when I experienced my first epileptic seizure.
None of my family members knew why I was suddenly acting and behaving so differently. They did not realize for a long time that I was experiencing epileptic auras and seizures. I did not receive my epilepsy diagnosis until I was 10 years old.
My auras and seizures increased progressively, and the family doctor could not control the seizures. I was finally taken to a neurologist in eighth grade, who immediately changed my medication and brought my seizures under control. However, my ongoing auras and gelastic seizures never went away. I also experienced cognitive-behavioral difficulties, and as an adult, my seizure type grew to include atonic, drop-down seizures.
Although I was always able to work full time, my mental health rapidly deteriorated and I experienced severe depression and three separate mental breakdowns as an adult within a 36-year period.
Somehow, I persevered resiliently and was always able to financially and emotionally support myself and my small family. When I learned as a young adult that epilepsy is a disability, I was determined to never allow my epilepsy to make me disabled!
I was successful in my mission until I was 55 years old. That was when I experienced my third and final mental breakdown and wound up at San Francisco General Hospital. Through a series of events and great timing, the Department of Neurology at UCSF began treating me and promptly ordered a brain MRI in 2018. They discovered a Hypothalamic Hamartoma at the base of my brain and successfully and completely removed it in 2019 by thermal ablation surgery. Through the neurosurgeon’s adept skills, I received immediate, complete, and continued relief from all of my symptoms. Gone immediately, and for good, were all auras (gelastic seizures), seizures, depression, cognitive-behavioral difficulties, and suicidal thoughts and ideations.
UCSF has gifted me a brand-new brain, mind, and life! I would not be here today without their vast wealth of knowledge and experience, and expert medical skill and care. I will always appreciate and value them as outstanding medical providers, and I thank them from the very bottom of my heart.
The sole reason I want to share my story is to help spread information and awareness about these horrific things so that more children may be able to receive a TIMELY diagnosis, certainly not 55 years after the fact as was my case. These things are so rare that hardly any people have even heard of them before! I went through heck and back my whole life because of that undiagnosed thing. That’s a crying shame and completely unnecessary now, with the advent of brain MRIs in the 90’s. I just can’t sit back and not do something to try to help educate more people about this thing. If I can help even one child be able to receive a timely and accurate diagnosis, then all my efforts will be worth it. What about hundreds of children, or even thousands?! Me sitting back and doing nothing just wasn’t an option for me as far as I, and all the other undiagnosed children out there, are concerned.
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