I had the pleasure of working for HD Reach as a Social Worker facilitating a support group. HD Reach is a non-profit organization that works to provide support to families with Huntington’s disease. They make connections to medical providers, offer referrals to local services, care management, family support through support groups and provide psychoeducation and anonymous genetic testing. Before I started working at HD, I was vaguely familiar with Huntington’s disease but learned so much about the mental health components that affect the quality of life for so many.
What is Huntington’s Disease?
According to The Mayo Clinic, “Huntington’s disease is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.” Many people are affected by the behavioral changes of the disease and may exhibit signs of paranoia, mood swings,
suicidal thoughts, depression, psychosis, and aggressive behaviors. Some people decide to receive genetic testing when it is discovered they carry the inherited defect in a single gene. However, genetic testing is personal and controversial. Some people choose to not undergo additional testing to determine if they are a carrier. Some women also decide to have children despite the risk that their child may be born with the genetic markers for Huntington’s Disease.
Studies and Cures
Over the last ten years, studies have become more prevalent and more doctors have knowledge of the disease. Unfortunately, there is no cure for Huntington’s disease. The National Institute of Neurological Disorders and Stroke has published various studies in hopes to learn more and turn research into treatment. In accordance with the National Institute of Neurological Disorders:
- A new avenue of NINDS-supported research is asking whether additional changes to the mutant Huntington gene during development and in adulthood impact disease onset and severity. It also asks whether the mutant Huntington gene affects the brain’s overall ability to maintain healthy, undamaged DNA. This work is a promising area for identifying new modifiers of HD onset and progression that may be attractive drug targets.
- Excessive chemical signaling between cells in the brain may lead to chronic overexcitation. This overactivation of neurons to turn on is toxic to neurons. Several labs are investigating whether drugs that counteract excitotoxicity might help against HD.
- Cutting-edge methods such as optogenetics (where neurons are activated or silenced in the brains of living animals using light beams) are used to probe the cause and progression of cell circuit defects in HD.
One way that people living with Huntington’s disease have found comfort, is by finding support groups with others living with HD who can understand the day-to-day struggles. Finding a community can be tough but rewarding. There are national and international groups all across the country. Support groups allow individuals to share their innermost thoughts and feelings in a safe nonjudgmental space. During these sessions, participants were open to discussing their lives before and after the diagnosis of HD. Many of the individuals who participated were
teachers, pastors, and physicians who once diagnosed had to change the direction of their lives. I was astounded by the bravery of the people who chose to share their stories and the faith they relied on to push through difficult times.
If you or someone you know is living with HD please reach out to organizations that can offer assistance by way of resources. In addition to support groups, finding a great therapist can help alleviate feeling alone in any battle. Sometimes in life, we do not realize how much we have gained through our trials and tribulations. A great therapist will walk alongside you and remind you of your strengths.
Crystal Eve Outlaw, MSW, LCSWA, LCASA is a psychotherapist at 3C Wellness. She provides services in the state of North Carolina. Feel free to contact 3C Wellness today.
“I take pride in collaborating and empowering individuals from the beginning to the late stages of adulthood who are living with co-occurring disorders, psychosocial barriers and diverse mental health/substance use needs.”