Medical IDs for Huntington’s Disease
The confidence to live with Huntington’s disease
Huntington’s disease (HD) is a rare but serious condition that causes changes in the part of the brain that affects movement, mood, and thinking. Although rare, HD affects hundreds of thousands of people around the world, including tens of thousands in the U.S. There is no cure for Huntington’s disease and there is no way to slow it down. However, treatments are available that can help improve a person’s quality of life. People living with Huntington’s disease can also take a number of steps on their own to protect themselves while they are out and about in the world.
One major step is to wear a MedicAlert medical ID for Huntington’s disease.
How MedicAlert protects those living with Huntington’s disease
One thing you shouldn’t worry about is what could happen if there’s an emergency. MedicAlert’s protection plans offer benefits that extend beyond the ID, providing safety and peace of mind for people living with Huntington’s disease, their families and caregivers.
24/7 Emergency Response
Our team provides first responders the information they need to provide fast, accurate care.
Digital Health Profile
All your vital information, all in one place for you and your caregiver.
Emergency Contact Notification
In an emergency, we connect families so that no one is alone in a crisis.
Share the information that’s important to your care, such as use of rescue medications or contraindication for tests like MRIs.
Pair a medical ID for Huntington’s disease with the protection plan that’s right for you.
What exactly is Huntington’s disease?
In 1872, Dr. George Huntington described the symptoms of a disease that had an impact on the person living with it and their family. Originally called Huntington’s chorea (derived from the Ancient Greek word “choreia,” which means dance), the condition became known as Huntington’s disease in the 1960s. Today, it is estimated that around 30,000 people in the U.S. are living with HD, and another 200,000 Americans are at risk of developing the disease.
Huntington’s disease is a progressive brain disorder caused by a faulty gene in an individual’s DNA. DNA (deoxyribonucleic acid) is the hereditary material in humans and almost all other organisms. Because the disease attacks the brain, a person living with Huntington’s disease will experience uncontrollable movements (chorea) in the face, hands, and feet. Over time, symptoms worsen, affecting the way a person walks and talks. As the disease continues to progress, it begins to affect swallowing, emotions, thinking, mood, and memory.
Types of Huntington’s disease
Huntington’s disease has two subtypes, including adult-onset Huntington’s disease and Juvenile-onset Huntington’s disease.
- Adult-onset Huntington’s disease is the most common form of Huntington’s disease. People with adult-onset Huntington’s disease typically develop symptoms between ages 30 and 50. In extremely rare cases, symptoms of HD can develop as early as two years of age or as late as 80.
- Juvenile-onset Huntington’s disease is very rare and it affects children and teenagers. Children with Huntington’s disease often experience the same symptoms as people living with Parkinson’s disease. Children and teens may also develop problems with schoolwork.
It is important to note that although some symptoms of Huntington’s disease may overlap with those of other conditions such as Parkinson’s, Alzheimer’s, and dementia, there are a number of distinct differences. One of the biggest differences is age. Parkinson’s, Alzheimer’s, and dementia are more common as people grow older.
The vast majority of people living with Parkinson’s are over age 60. People living with Alzheimer’s disease are usually 65 and older. About one-third of all people age 85 and older have some form of dementia, with 83.7 being the average age of onset.
What causes Huntington’s disease?
According to the Alzheimer’s Association, Huntington’s disease is caused by a single defective gene on chromosome 4—one of the 23 human chromosomes that carry a person’s entire genetic code. Researchers at UC Davis Health explain that each of us gets one copy of the gene from our mother and one copy from our father. This defect is “dominant,” meaning that anyone who inherits it from a parent with HD will eventually develop the disease.
The defective gene that causes Huntington’s disease contains a sequence with several Cytosine, Adenine, and Guanine (CAG) repeats. While all humans have these CAG repeats in the gene that codes for the huntingtin protein-HTT (found in the cells of the body), people with HD have a greater number than usual of CAG repeats in one of the inherited genes.
While different sources vary slightly in describing the significance of CAG repeat numbers, UC Davis researchers have provided the following explanation from a well-respected genetics website:
- Normal: 26 or fewer CAG repeats
- Intermediate: 27-35 CAG repeats. Not at risk of developing symptoms of HD, but because of instability in the CAG repeats, a person with a CAG number in this range may be at risk of having a child with an expansion of the CAG repeats into the HD-causing range
- Reduced Penetrance: 36-39 CAG repeats. People who have 36-39 CAG repeats may or may not develop symptoms of HD. This size repeat is also considered unstable so that future generations could be at risk
- Affected: If you have 40 copies of the CAG repeats in one of your HD genes, you will develop symptoms of HD over the course of a natural lifespan. If a person has 60 or more CAG repeats this would result in Juvenile-onset HD
According to researchers at UC Davis, the number of CAG repeats an individual has is determined at conception and is not expected to change over time. However, the gender of the parent you inherit an HD expansion from may play a role in determining the number. If you inherit the HD-causing gene from your father, the number of CAG repeats may increase, expanding as the gene is passed from father to child. But if you inherit the gene from your mother, the number of CAG repeats usually remains stable.
This is significant, according to UC Davis, because the number of CAG repeats plays a role in the age of onset. In general, the higher the number of CAG repeats, the earlier the onset—although exceptions occur regularly, so this is only a general guideline. Other genetic and non-genetic variables also contribute to the complex issues that determine the age of onset and severity of HD symptoms.
What to engrave on your MedicAlert medical ID for Huntington’s disease:
MedicAlert offers free custom engraving on all our medical ID products. Engravings on medical IDs for Raynaud’s syndrome should include any critical medical information that can protect and save lives in an accident or medical emergency, for example:
- Huntington’s disease
- Assistive devices, such as a cane or walker
- Designated physician and emergency contact information.
- Any additional medical information that needs to be communicated to first responders
Sample engraving. Consult our team if you need help engraving your medical ID for Huntington’s disease.
What are the symptoms and complications of Huntington’s disease?
Symptoms of Huntington’s disease can be divided into three stages: early, middle, and end.
Early symptoms of Huntington’s disease often include:
- Clumsiness and stumbling
- Depression, including sadness, lack of interest in things, and feelings of hopelessness
- Difficulty concentrating
- Memory lapses, forgetfulness
- Mood swings, such as aggressive behavior and irritability
As Huntington’s disease progresses, the individual may develop middle symptoms such as:
- Breathing problems
- Difficulty moving around
- Difficulty speaking clearly
- Impaired judgment
- Increasingly slow or rigid movements
- Personality changes
- Problems swallowing
- Significant weight loss
In the end stages of Huntington’s disease, people living with the condition may have great difficulty performing daily activities such as bathing and eating. In these cases, the individual will need full-time nursing care.
How do you diagnose Huntington’s disease?
One of the mainstays of diagnosing Huntington’s disease is genetic testing to determine if you have a mutation on the HTT gene. During the first part of the test, a healthcare provider will draw blood and send it off to a laboratory. The second part of the test consists of analyzing your DNA, and is usually performed by a genetic counselor—a person who specializes in genetic testing.
Other tests and exams to help diagnose Huntington’s disease are performed by a neurologist—a doctor who specializes in the nerves and brain. Examples include:
- Additional blood tests
- Assessment of coordination and balance
- Computed tomography (CT) scan
- Magnetic resonance imaging (MRI)
- Physical exam to look for involuntary movements such as jerking and twitches
MedicAlert Foundation is proud to partner with NORD to provide support, educational resources and tools to help those affected by rare disease live more safely and confidently.
How do you treat Huntington’s disease?
There is no cure for Huntington’s disease and there are no treatments that can slow or halt the disease. However, certain drugs and therapies can help manage the symptoms of HD, which can help improve a person’s quality of life. While treatment will vary by individual, doctors typically take a multidisciplinary approach by building a team of neurologists, psychiatrists, physical therapists, occupational therapists, speech therapists, and genetic counselors. Together, these individuals can develop a plan that addresses the person’s individual needs.
To control chorea, doctors commonly prescribe:
- Deutetrabenazine (Austedo)
- Haloperidol (Haldol)
- Tetrabenazine (Xenazine)
To help manage emotional symptoms, your doctor may recommend:
- Antidepressants, such as fluoxetine (Prozac, Sarafem) and sertraline (Zoloft), to relieve depression
- Antipsychotic drugs, such as risperidone (Risperdal) and olanzapine (Zyprexa), to reduce aggressive behavior and irritability
- Mood-stabilizing drugs, such as lithium (Eskalith), to decrease anxiety and prevent severe mood swings
How medical IDs for Huntington’s disease combined with MedicAlert Membership provide peace of mind
People living with Huntington’s disease may have trouble communicating. The condition can also be mistaken for other disorders such as Parkinson’s disease or Alzheimer’s disease. HD can even be mistaken for being intoxicated. If you are in an accident or have another medical emergency, a MedicAlert medical ID for Huntington’s disease lets emergency responders and ER doctors know you are living with the condition, ensuring that mistakes are not made related to your emergency care. Add a MedicAlert protection plan to your MedicAlert ID and you will have an added layer of protection in emergencies and other medical situations.
If you are living with Huntington’s disease, a MedicAlert protection plan can help ensure fast and accurate treatment by delivering detailed information about your condition, current treatments, and medications to emergency responders, ER doctors, and other emergency medical staff. This will ensure that your entire healthcare team knows that you are living with a condition that affects the way you move, think, and behave, allowing them to quickly identify and administer the most appropriate treatment and care.
- We’re your voice: If you can’t speak for yourself due to a medical emergency, your ID will speak for you – informing others about your Huntington’s disease and any medications you’re taking.
- 24/7 emergency protection: In an emergency, the MedicAlert team will relay all of your critical medical information to first responders, no matter where or when your emergency happens.
- Always connected: You should never be alone in an emergency. That’s why MedicAlert will reach out to your designated contacts if you are unable to do so.
- Live with peace of mind and confidence: MedicAlert will be there for you every step of the way. You’ll have the confidence and freedom to live your life with Huntington’s disease, knowing we’ve got you covered.