When we think about Huntington’s disease, involuntary movements are often the first symptom that comes to mind. But Huntington’s affects much more than movement.
During a recent European Huntington Association (EHA) webinar, Professor Zacharias Kohl (University of Regensburg, Germany) and Dr Marta Tomczyk (Medical University of Gdańsk, Poland) explained why researchers now see Huntington’s as a disease that can affect many different parts of the body—not just the brain.
This growing understanding is helping people, families and healthcare professionals recognise symptoms that might otherwise be overlooked, while reminding us that Huntington’s disease affects much more than the brain alone.
Although involuntary movements are one of the best-known signs of Huntington’s disease, they do not affect everyone in the same way.
Some people develop chorea, while others experience slowness of movement, muscle stiffness or difficulties with balance. As the disease progresses, problems with walking, falls, speech and swallowing may also appear. Many of these symptoms can occur at the same time, making every person’s experience of Huntington’s disease unique.
For many families, the most difficult changes are not always the physical ones. Some of the symptoms that affect everyday life the most are often invisible. Changes in mood, behaviour, thinking and concentration, can appear years before a diagnosis and often have a profound impact on daily life —not only for the person living with Huntington’s disease, but also for their family.
Recognising these changes is important. Understanding that they are part of the disease helps families make sense of what is happening and opens the door to the right support and care.
For many years, Huntington’s disease was mainly seen as a disorder that affects the brain. Today, researchers are discovering that the disease may also have an impact on many other parts of the body.
This may help explain why many people living with Huntington’s disease experience health problems that go beyond movement, thinking or behaviour. During the webinar, Professor Kohl explained that studies involving both people living with HD and laboratory models have identified changes in muscles, digestion, metabolism, the heart and other body systems. Although researchers are still working to understand exactly why these changes happen, they are helping us build a more complete picture of the disease.
Weight loss is one example. Many people living with Huntington’s disease experience it, and researchers now believe it may be linked not only to movement or eating difficulties, but also to changes in the way the body produces and uses energy.
This growing understanding reminds us that HD is much more than a neurological condition. Researchers are also investigating changes in metabolism, digestion, hormone regulation, cardiovascular function and the body’s response to stress.
The more we learn about HD, the clearer it becomes that every person deserves care that looks beyond movement symptoms and considers their overall health, wellbeing and quality of life.
Understanding Huntington’s disease as a multisystem disorder also changes the way we approach care. Changes such as weight loss, swallowing difficulties, sleep problems, fatigue or digestive issues can all have an important impact on daily life.
Because many of these changes happen gradually, they can easily be overlooked. Professor Kohl encouraged people and families to talk about any new symptoms with their healthcare team, as recognising them early may help improve care and prevent complications.
He also reminded us that not every health problem is caused by Huntington’s disease itself. Like everyone else, people living with Huntington’s disease can develop other medical conditions that also require diagnosis and treatment. Looking at the whole person—not just Huntington’s disease—remains an essential part of good care.
The more we learn about Huntington’s disease, the clearer it becomes that good care is about much more than medication. Supporting someone with Huntington’s disease means caring for the whole person and addressing the many different ways the disease can affect everyday life. Rehabilitation, speech and language therapy, good nutrition, physical activity and support from different healthcare professionals can all help improve quality of life.
This new understanding is also guiding research. For many years, clinical trials focused mainly on measuring changes in movement symptoms. Today, researchers are increasingly looking at other aspects of the disease, including metabolism, weight loss, cardiovascular health and muscle function, alongside the development of therapies targeting the brain.
By looking beyond movement symptoms, scientists hope to develop better treatments and improve care for everyone affected by Huntington’s disease.
Every study brings us one step closer to better care and new treatment opportunities. And every person and family who takes part in research plays an essential role in making that progress possible for the whole Huntington’s community.
If you would like to learn more about Huntington’s disease as a multisystem disorder, you can watch the full webinar recording below.
Article written by Ruth Blanco