Adults with HH

Adults with a chronic and sometimes catastrophic rare disease like Hypothalamic Hamartoma Syndrome must deal with a wide range of issues, beyond the medical condition itself. Hypothalamic Hamartoma Syndrome can affect individuals differently and that is especially true for adults with HH. While a great deal of information is available concerning treatment and outcomes for children, Hope for HH is working hard to encourage more research into adult specific issues. For now, we have included the following resources to help with the journey.


1. Mental Health Concerns

As an adult with HH, it is important to:

  • Recognize the symptoms – anxiety, depression, mood swings, social anxiety, low stress tolerance, headaches, and excessive fatigue (both mental and physical) can all be a part of the HH syndrome and can be more apparent as an individual ages.
  • Seek professional help – mental health issues may be due to stress, having a chronic medical condition, or even a hormonal imbalance associated with hypothalamic hamartoma – or a combination of all of these! They can significantly affect a person’s quality of life and if left unaddressed, can lead to other challenging issues.
  • Address potential effects of Illness Induced Post Traumatic Distress Disorder (PTSD) – PTSD that can be the direct result of living with a chronic illness. It’s estimated approximately 12-25% of those who survive a perceived life-threatening medical event will develop PTSD. Learn more about the symptoms and potential treatments.
  • Educate yourself and your caregivers about the importance of a balanced lifestyle and the effects of stress on your overall well-being. For more information, check out the  Wellness Institute – an Epilepsy Foundation resource that promotes a holistic approach to health for people with epilepsy and their caregivers.

2. Managing Your Health

There are resources to make it easier:

  • Have a Seizure Action Plan – indicate what support you need and who should have this information if you are unable to seek help yourself.
  • Be Prepared for Doctor Visits – write down questions in advance and have a place to keep notes. Bring a friend or caregiver whenever possible to take notes for you.
  • Maintain a Seizure Diary – this can be on paper or an app on your phone; having this information may be useful when it comes to medication adjustment and other treatment changes. A sample form is here and a possible app like (for Apple) or here for Google Play may also be helpful. (Note: Seizure Tracker is the only app currently that allows for tracking gelastic seizures).
  • Maintain a Medical Binder – having all your important information in one place can be incredibly helpful. This binder should include; a list of all medications, Healthcare Team contact info, insurance information, and any information you can provide about your specific conditions. Additional information you might include can be found here.
  • Be SUDEP Aware–The greatest risk factors for Sudden Unexpected Death in Epilepsy (SUDEP) are uncontrolled generalized tonic clonic seizures (also called convulsions) and seizures that happen at night. For a better understanding of your risk factors and what can be done, read the SUDEP FACTS. For a list of good questions to ask your doctor, read SUDEP; Knowledge is Power.

3. Independent Living

Many things can affect a person’s ability to live independently, work remotely or on location, and manage the complex problems that life can bring daily. Before deciding which option is best for you, have an in-depth conversation with those who support you. Topics to consider:

  • Seizure type, severity, or frequency
  • After effects of a seizure
  • Impact of seizures and side effects of treatment on cognition, mood, social abilities, relationships, and more
  • Other neurological and developmental challenges, which may be associated with having a hypothalamic hamartoma
  • The environment and area where the person will live
  • Cost of living, the person’s financial stability, and community resources
  • Access to transportation – driving, public transportation, Uber/Lift
  • Employment opportunities in the local area and willingness to support individuals with disabilities
  • Access to medical care, both critical care and on-going

4. Financial Concerns

  • Health Insurance – There are resources specifically for patients and families dealing with insurance providers and being denied coverage. If you are struggling, check here for organizations in the US.
  • Medical financial assistance
  • Financial planning – there are many costs associated with a chronic condition like epilepsy and HH. Long term planning and knowing what resources are available will help with financial planning.
  • For more detailed information on financial support, please visit Financial Information.

7. Get Support

Nobody chooses to go through such challenging situations, but when life throws us curve balls, many realize that they have a deep reserve of strength that they never thought they could find. It is often most helpful to find others who are experiencing the same type of journey. Hope for HH provides the following opportunities: