Huntington's Disease: What Is the Prognosis and Life Expectancy?
By: Nadia Khan
Updated December 23, 2020
Medically Reviewed By: Natalie Feinblatt
Huntington's disease is rare, but it is a terminal illness. It's probably difficult to accept, but if you or someone you love has been diagnosed with Huntington's, they will likely die from the disease or one of its symptoms. Before we discuss the prognosis and life expectancy of someone with Huntington's disease, we'll look at this illness in more detail.
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What Is Huntington's Disease?
Huntington's disease is a rare brain disorder involving the breakdown of nerve cells. Discovered by George Huntington in the late 1800s, it's a disease caused by a defective gene on chromosome 4. More specifically, it's the HTT gene. This gene is responsible for creating a protein known as huntingtin or HTT, and it's believed to help your nerve cells. It keeps them strong, prevents them from self-destructing, and can benefit your muscles as well. A mutated HTT gene will give off mutated huntingtin, which may attack your nerve cells instead of helping them.
As the nerve cells begin to break down, you start to lose basic functions in your brain. Your muscles begin to lose functionality and can twitch involuntarily. You'll also lose your balance. In addition, your speech will become more difficult, and soon you'll need full-time care to get through your day.
Because Huntington's disease is a genetic condition, a person affected with the disease has a 50 percent chance of spreading it to their offspring. Although it typically develops in adults between the ages of 30 and 50, symptoms can show up as early as two years of age or as late as age 80.
Life Expectancy of Huntington's Disease
One of the frustrating (or potentially positive) aspects about Huntington's disease is that it's difficult to predict life expectancy. After being diagnosed, someone may live for only ten years, or they may live for up to 30 years. If you were diagnosed in middle age, this means it's possible for you to have a normal life expectancy. That said, receiving a diagnosis at a young age can be quite frightening and difficult to accept, especially since there's no real timeline to predict how long you will live.
Some of the factors that can influence your life expectancy include:
- Being diagnosed with juvenile Huntington's disease: This is a rare form of Huntington's disease that usually appears before the age of 20. The symptoms are usually more severe, and people with it rarely live longer than ten years.
- Showing more symptoms early on can mean a shorter life expectancy: Sometimes, the symptoms appear over a long period of time. Other times, you may experience more symptoms at once.
- Treating your Huntington's disease can slow down the progression of the disease, so you live longer: While there's no cure, treating the symptoms and living a healthy lifestyle can extend your lifespan by quite a bit.
- Avoiding situations that can injure or kill you: For example, many patients with Huntington's disease can die due to falls, so you keep yourself safer by avoiding falls or dangerous situations.
- Treating depressive symptoms: Depression can occur in Huntington's disease patients, creating even more physical and mental distress.
In short, there are certain steps and measures you can take to extend your lifespan. However, it's hard to predict the progression of your illness. This is why it's so important to have a support system and to enjoy your life. Practicing mindfulnesscan help you with that. It's also important to be diagnosed early.
Early Symptoms of Huntington's Disease
Early symptoms of Huntington's disease may not be obvious. Someone with these symptoms may think they're just getting older, going through a phase, or simply having an extra clumsy day. However, if you keep track of your symptoms or know you're at risk for Huntington's disease, they can be eye-opening.
- You might feel nervous. You may twitch or fidget, even though you may not have much to get nervous about.
- Everyone gets a little restless sometimes, but people with Huntington's disease may feel even more restless than usual.
- You may experience clumsiness. Again, everyone is a little clumsy, but you may become clumsier than you used to be.
- You may feel unbalanced when walking. This may lead to trips or falls, which can injure you.
- If you write by hand, you may notice that your handwriting has gotten worse.
- You may have some trouble with tasks. For example, it may be harder to drive.
- You may have short-term memory loss.
- Some people may have problems figuring out new situations. If you've always been a person who adjusts to new situations quickly, but you're suddenly having difficulty, it may be a symptom of the disease.
- You may feel depressed, irritable, or apathetic.
- You may not be able to organize your tasks very well.
- You may behave impulsively. Everyone gets a little impulsive at times, but those with Huntington's disease will show even more signs of impulsiveness.
If you're experiencing any of these symptoms, it might be a good idea to speak to a doctor. They will be able to rule out other illnesses and determine if you have Huntington's disease. A simple genetic test is all that's needed to render an accurate diagnosis. If you do, indeed, have the disease, catching it early can help you get started on treatments and managing your illness.
Source: javi_indy via freepik.com
As mentioned before, the progression of Huntington's disease is unique to every individual. For some people, their symptoms may not worsen for years, while others will decline rapidly. Others who are diagnosed may lose all motivation and succumb to the disease. However, by keeping yourself healthy, you may be able to ward off the symptoms for a while before the disease progresses to an advanced stage.
Advanced symptoms include the following:
- You may experience jerkier movements. As the muscles decline, they may jerk more often, which can increase your chances of injury.
- Your speech will worsen. Since muscles control speech, it will be harder to speak without the aid of a speech therapist.
- You may develop psychiatric disorders. Besides depression, you may have OCD or bipolar disorder.
- You have reduced cognitive ability, and at some point, you may develop dementia.
- You will become less independent, and you will need to have assistance while performing daily tasks, such as eating or dressing.
- Finally, the weight of your brain decreases. The average adult brain weighs about three pounds, but by the end of your prognosis, the brain may weigh about two pounds.
Treating Huntington's Disease
Unfortunately, there's no cure for Huntington's Disease, nor is there a way to slow down the changes that the disease causes in the brain. For now, treatment involves managing the symptoms. This approach can provide the individual with some relief and enable them to live a healthier life.
Treatment options include:
- Treating the psychiatric symptoms of HD: Antidepressants and antipsychotics may help treat depression or bipolar disorder. Some medications do have side effects, so usage should be monitored.
- Treating your muscles: Some medications can reduce the number of involuntary muscle movements you experience.
- Speech therapy: As the disease progresses, speaking may become difficult. A speech therapist can help you communicate better.
- Physical therapy: You may need physical therapy to be able to function in your daily life.
Source: javi_indy via freepik.com
When diagnosed with Huntington's disease, look into treatment options as soon as you can. Some people lose the motivation to do so, thinking it's a pointless endeavor, but treatment may allow you to keep your independence a little longer and make you feel more comfortable.
How BetterHelp Can Support You
In addition to therapy and medication, anyone diagnosed with Huntington's disease should consider counseling. Speaking to a therapist, whether in person or online, can help the individual work through emotions and figure out next steps. If you're recently received a diagnosis, it may feel like a death sentence, but you likely have many good years ahead of you. A counselor can help you process the situation.
Your family and loved ones may need the support of a counselor as well. They may be distressed by the idea of seeing you succumb to the disease, and they may need counseling to better understand what you're going through and what they can do to support you, especially in the more advanced stages. No matter what you and your loved ones need, therapy is available to help you out.
Studies have shown that online therapy is an effective way of providing help to those experiencing depression and other mental health concerns that may arise from Huntington’s. One study found that cognitive-behavioral therapy (CBT) can decrease psychological distress, including depression and anxiety, in peopleliving with HD. CBT is increasingly being administered through online platforms, which are generally considered more accessible and affordable than in-person forms of counseling. By creating a better understanding of individuals’ thoughts and behaviors, cognitive-behavioral therapy helps individuals manage feelings of sadness or grief that may be associated with life-threatening diseases
As mentioned above, if you or someone you know is struggling with complicated emotions related to Huntington’s, online therapy is available to help. Without being limited to those therapists who happen to be in your area, you’ll have access to qualified mental health professionals from around the US, and beyond, with BetterHelp. This means you’ll have a better chance of matching with a therapist who knows exactly how to help you manage your specific symptoms. Below, you'll find some reviews of BetterHelp counselors from people experiencing a range of life's unexpected challenges.
"I've been to many different therapists but Julia ranks 1000% over the others. She's honest, I feel like she would never judge me and the fact that I have a rare disease, the fact that she took the time to research actually brought me to tears. She's pretty amazing."
"James is genuine, compassionate, smart, and responsive. He actively engages your mind and challenges you to reach beyond your predicament or way of thinking and doing. He has taught me much about myself in just a short time, and I know the effort I put in with James will pay back 10-fold!"
While Huntington's disease is a stressful experience with an uncertain prognosis, it's not a reason to give up on life. It's possible to treat some of the symptoms and try to lead a healthy life for as long as possible. If you've been diagnosed, you don't need to let the disease take over. Help is available for you and your loved ones.
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