HH Comorbidity Survey – Initial Results
Neurological issues associated with hypothalamic hamartomas have been well studied in the last 10 plus years. However, when it comes to the cognitive challenges experienced by individuals with HH, the number of studies is extremely limited. While professionals can agree that cognitive abilities and behavior are often impaired in individuals with hypothalamic hamartomas (HHs) and epilepsy, the reasons for this have not been adequately understood. It is believed that the reason some individuals experience more severe cognitive impairment may be influenced by: (1) earlier age of first seizure, (2) higher seizure frequency, (3) larger HH lesion size, and (4) higher number of antiepileptic drugs (AEDs) at any given time.
In our HH Comorbidity Survey, when it came to the top five cognitive issues experienced – both adults and children seemed to track at about the same levels. Again, these are just the top five as indicated by survey participants and is NOT all-inclusive of what cognitive challenges any one individual may experience. Some individuals may experience only one of these conditions and some may experience all five!
While we cannot offer any conclusions when it comes to why these particular areas seems so prevalent, we hope that identifying these areas and sharing the data with medical professionals will result in a better understanding of the entire spectrum of HH as a syndrome. There are still so many questions to be answered. Some individuals see a significant improvement in cognitive function after surgery and others feel they struggle with executive function and memory issues even after treatment.
Whenever possible, we suggest you have a neuropsychologist on your team that you can talk to about any cognitive issues you or your loved one may be experiencing. Often, a referral to a Speech Therapist, Occupational Therapist, or Psychiatrist is helpful when it comes to identifying areas that can be strengthened with therapy. Finally, sleep, or more specifically – the lack of good quality sleep can also impact cognitive function. A sleep study may help identify issues such as sleep apnea which can affect the brain’s ability to function normally.
Make sure to check out our other blogs regarding the initial results from the HH Comorbidity Survey:
- Psychiatric Behaviors, Conditions, and Personality Characteristics
- Endocrine Conditions and Symptoms
- Surgical Treatment Spectrum
Stay tuned for our next blog in our series of information from the HH Comorbidity Survey where we will be talking about issues of most concern to the adults with HH that responded to our survey!
If you have not yet taken the time to participate in this short but extremely valuable HH Comorbidity Survey – you can access the survey in multiple languages here [English] [Russian] [German] [French]. For more information on why participating in this survey is so important please read Why Do The Comorbidity Survey? If you have any questions, please send an email to info@hopeforhh.org.
Take the HH Comorbidity Survey Today
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| French Survey | German Survey | Russian Survey | English Survey |
