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What is Juvenile
Huntington's Disease?
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Ashley Beard with Champions for HD Founder and President, Shelby Lentz. Ashley had JHD and received a wheelchair from Champions for HD.
Juvenile Huntington’s Disease (JHD) is a rare, early-onset form of Huntington’s Disease that begins in childhood or adolescence — usually before the age of 20. While it shares the same genetic cause as adult-onset HD, JHD progresses more rapidly and presents different challenges for families and caregivers.
Only about 5–10% of all Huntington’s cases are classified as juvenile, making it one of the rarest — and most devastating — forms of neurodegenerative illness.
🧬 What Causes JHD?
JHD is caused by the same mutation in the HTT gene that causes adult-onset HD — an excessive number of CAG repeats in a person’s DNA. However, in most JHD cases, the number of repeats is much higher, leading to earlier onset and faster progression.
Children with JHD often begin showing symptoms in early childhood, adolescence, or the teenage years.
🧠 Common Symptoms of JHD
Unlike adult HD, which often begins with movement issues, JHD symptoms tend to appear more neurologically or behaviorally first.
Symptoms may include:
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Changes in school performance or learning difficulties
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Mood swings, depression, or aggression
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Loss of previously learned motor skills
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Seizures
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Slurred speech or difficulty swallowing
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Rigid muscles, balance issues, and involuntary movements (chorea)
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Difficulty walking, eating, or communicating
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Loss of independence at a very early age
JHD often progresses more quickly than adult HD, requiring full-time care and support much earlier in life.
🦋 Bre's Story
For us at Champions for HD, JHD is more than just a diagnosis — it’s personal. 💜
Shelby Lentz, our founder, watched her little sister Breanna fight bravely after being diagnosed with Juvenile Huntington’s Disease at just 12 years old. Breanna lost her ability to walk, talk, and eat by the age of 13 — and passed away at just 14 years old. She remains the heart behind everything we do.
We honor her spirit by supporting other JHD families with resources, financial aid, and hope.
📊 How Many Children Are Affected?
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Juvenile HD accounts for less than 10% of all HD cases
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It is considered an ultra-rare disease
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Families impacted by JHD often face financial and emotional burdens far beyond what most can imagine
💡 How We Help JHD Families
Through our Moments That Matter program, direct family support, and awareness events, we help children and families impacted by JHD by:
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Providing medical and legal assistance
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Hosting benefit concerts and awareness campaigns
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Funding adaptive equipment and memory-making experiences
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Supporting research into treatments and therapies
📘 Brave Breanna
Want to learn more about Breanna’s story?
Visit our Brave Breanna page ➝ to read about the book written in her honor, her legacy, and how her courage continues to inspire families around the country.
💜 You're Not Alone
If your child or someone you love is living with Juvenile HD, you are not alone. We’re here to walk this journey with you — one day, one memory, one story at a time.
Reach out to us. Share your story. Let us be in your corner.
“Watching my little sister battle JHD changed me forever. Breanna was so full of life, joy, and strength — even when the disease took everything else. I started Champions for HD so no other family would have to walk this journey alone.” - Shelby Lentz, Founder