My neuropsychiatrist shares her perspective on Huntington’s

Kasia Rothenberg, MD, PhD, is my neuropsychiatrist and one of the most compassionate, skilled providers I’ve had on my care team since being diagnosed with Huntington’s disease (HD). I am proud to share her wisdom with the broader Huntington’s community in this special interview.

Rothenberg is the co-director of the Huntington’s Disease Society of America (HDSA) Center of Excellence at Cleveland Clinic and an expert in brain health. As a neuropsychiatrist, she brings both a scientific and human lens to this complex condition.

Excerpts from our recent phone conversation follow.

TA: As co-director of an HDSA Center of Excellence, what’s your role and what inspires you most about working with the Huntington’s community?

KR: I am a neuropsychiatrist. I love working with HD patients. I was pleasantly surprised and honored to be invited to join the [HDSA] Center of Excellence. It has been incredibly meaningful. There is so much potential in this field. Every person with HD I meet has a story and strength that inspires me.

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What are some of the unique challenges and rewards of treating a complex condition like Huntington’s disease?

It’s not easy, but I see this work as a privilege. I’ve worked with patients with serious neurodegenerative diseases like Alzheimer’s, Parkinson’s, and Huntington’s. What drew me in initially was a fascination with brain physiology. But what keeps me here are the patients.

The Cleveland Clinic uses a multidisciplinary model. Who makes up the Huntington’s care team, and how does this collaboration benefit patients and families?

Our goal is to bring together people who understand the brain and HD specifically. Our team includes a neurologist, psychiatrist, psychologist, genetic counselor, occupational and physical therapists, and a social worker. We collaborate and share insights with one another so that the care plan is truly holistic. Every patient is unique, and their care should reflect that.

Beyond medications, what non-drug supports or lifestyle practices do you recommend for people with Huntington’s? What’s your view on medical cannabis in this context?

We’re learning more each day about how to protect the brain, not just treat the disease. Sleep is essential. Sleep hygiene, structure, and consistency in lifestyle make a big difference. Diet and physical activity are equally important. As for cannabis, we currently don’t have strong, recognizable studies on its effects with people who have HD. It may hold promise, but it also carries risk, and we must be cautious and evidence-based in how we evaluate it.

Psychiatric and behavioral symptoms are often overlooked in HD. How do you approach treating these symptoms?

HD has long been misunderstood as just a movement disorder. That’s simply not true. Psychiatric symptoms like depression, irritability, anxiety, sleep disturbances, and impulse control issues are very real. It’s essential that we recognize and treat them. Medications can help, and so can cognitive behavioral therapy. We must treat the whole person, not just the visible symptoms.

What should caregivers know about HD’s cognitive and behavioral changes, and how can they care for both their loved ones and themselves?

We need to do more for caregivers. At our center, we try to include caregivers as partners in the treatment plan. HDSA support groups are a great resource. Our social workers help families access services and navigate care. But we need more time spent with families in appointments, more education, and more support for those providing daily care. Caregiver burnout is real and deserves our attention.

What advances in Huntington’s research are you most excited about, and how might they shape future treatment?

I am very excited about gene therapy research. I truly believe we will find ways to manage or slow disease progression in the future. Even now, I see progress in symptom management. The science is moving forward, and with it, so is hope.

What would you say to someone newly diagnosed or early in their Huntington’s journey?

If you’ve been newly diagnosed, you’re not alone. There are resources, and there are people like us ready to walk with you in this journey. I always try to give people honest, transparent answers. Many fear having the same experience a family member had, but HD care has come a long way. We know more than ever before, and we’re improving all the time.

Finally, what message or advice would you like to share with the entire Huntington’s community?

Be open and honest with your healthcare providers. Stay connected. Advocate for yourself. We’re partners in this journey. You are not a number or a diagnosis, you’re a person, and we’re here to walk beside you.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.