What Is The Prognosis And Huntington's Disease Life Expectancy?
By Nadia Khan
Updated December 20, 2018
Reviewer Natalie Feinblatt
Huntington's disease is rare, but it's a terminal illness for those who have it. It involves the gradual breakdown of nerve cells, causing the person to lose control of their muscles, speech, and cognition. If you are diagnosed, you are probably going to either die from the disease, or from one of its symptoms. In this post, we'll explain more about Huntington's disease as well as look into the prognosis and life expectancy of it.
What Is Huntington's Disease?
Huntington's disease is a rare genetic condition that involves the breakdown of nerve cells. First discovered by George Huntington, a person affected with Huntington's disease may have a 50 percent chance of spreading it to their offspring.
It's caused by a mutated gene. More specifically, the HTT gene. The HTT gene is responsible for creating a protein known as huntingtin, and that protein is 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 as opposed to helping them.
As the nerve cells begin to break down, you start to lose basic functions in your brain. Your muscles begin to lose function and can involuntarily twitch. You'll lose your balance. Your speech becomes more difficult. Soon, you can't live without a caretaker.
Life Expectancy Of Huntington's Disease
What's a bit frustrating about Huntington's disease is that it has a wide life expectancy. You may live for only ten years after being diagnosed, or you may live up to 30 years. If you were diagnosed in middle-age, this means that it's possible for you to live a normal life expectancy. However, you may live for only ten years. If you were diagnosed at a younger age, this could be quite frightening.
Here are some factors that can influence your life expectancy.
- Being diagnosed with juvenile Huntington's disease. This is a rare form of Huntington's disease that usually happens before the age of 20. The symptoms are usually more severe, and those with it don't live as long. Ten years is usually the longest one with juvenile Huntington's disease can live.
- Showing more symptoms early on can mean a shorter life expectancy. Sometimes, the symptoms spread themselves out over a long period. Other times, you may experience more symptoms at once.
- Treating your Huntington's disease can slow down the progressing, making you live longer. While there is no cure, treating the symptoms and living a healthy lifestyle can extend your lifespan by quite a bit.
- Trying to avoid situations that can injure or kill you. For example, many patients with Huntington's disease can die due to falls, and by avoiding falls, you can extend your life.
- Treating depressive symptoms. Depression can occur in Huntington's disease patients, and it can lead to suicide.
This is what's a bit frightening about Huntington's disease. You never know how long it will take. You may have a bit until you lose control over your body, or the symptoms can hit you quickly. While there are ways to extend your lifespan, it may not work sometimes.
Early Symptoms Of Huntington's Disease
Early symptoms of Huntington's disease may not seem obvious at first. The person who has them may think they're just getting older, going through a funk, or are extra clumsy today. However, if you keep track of your symptoms, or know you are at risk for Huntington's disease, they can be eye-opening.
- Nervousness. You may twitch or fidget, even though you may not have much to get nervous about.
- Restlessness. Everyone gets a little restless sometimes, but people with Huntington's disease may feel even more restless.
- Clumsiness. Again, everyone is a little clumsy sometimes, but you'll be clumsier than ever.
- You may feel unbalanced when walking. This may lead to trips or falls, which can injure or kill you.
- If you write by hand, you may notice your handwriting worsening.
- You may have some trouble with tasks. It may be harder to drive.
- You may have short-term memory loss. If there is no other reason why you may lose your memories, then it may be a sign.
- For some, they may have problems figuring out new situations. If you've always been a person who adjusts to new situations quickly, then this may be a sign that you have Huntington's disease.
- You may feel depressed, irritable, or apathetic. If there is no other reason for this, such as a situation or a chemical imbalance, it could be a sign of Huntington's disease.
- You may not be able to organize your tasks very well.
- Impulsiveness is another early symptom. Everyone gets a little impulsive at times, but those with Huntington's disease will show even more signs of impulsiveness.
These symptoms make life a little difficult, but you can still be able to do most tasks. If you're experiencing any of these symptoms, a doctor can rule out any other reasons for feeling this way and determine if you have Huntington's disease. A simple genetic test is all they need to diagnose you, and they can tell you whether you have it or not with certainty.
As mentioned before, the progression of Huntington's disease may depend. Some people may not worsen for years, while others will decline at a fast rate. People who are diagnosed may lose all motivation and let themselves succumb to the disease. However, by keeping yourself healthy, you may be able to ward off the symptoms for a while.
However, you'll see more advanced symptoms regardless. These included
- Jerkier movements. As the muscles decline, they may jerk more often, which can increase your chances of injury.
- Your speech will worsen. As 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.
- Your cognitive ability may be reduced. Soon, you may develop dementia.
- Your independence will worsen, and you will need to have assistance performing daily tasks such as eating or dressing.
- Finally, the weight of your brain goes down. The average adult brain weighs about three pounds, and by the end of your prognosis, the brain weight may go down to two.
When having Huntington's disease, you and your family need to be aware of the symptoms. This can indicate the prognosis of the disease.
Treating Huntington's Disease
There is so far no cure or way to stop the prognosis. There is a pill in the works that may be able to attack the mutated huntingtin protein, but that may not be available for a while. For now, treatment involves taking care of the symptoms. This can slow down the prognosis and help the person live a healthier life.
Treatment options include:
- Treating the psychiatric symptoms of HD. Antidepressants and antipsychotics may help treat depression or bipolar disorder. Since some medications do have side effects, usage should be monitored.
- Treating your muscles. Some medications can reduce the number of involuntary muscle movements you may have.
- Speech therapy. As the disease progresses, it may be difficult for you to speak. A speech therapist can help you communicate better despite the decline in your speech muscles.
- Physical therapy. You may need this to be able to function in your daily life.
When diagnosed with Huntington's disease, look into treatment options as soon as you can. Some may lose the motivation to do so, thinking it's pointless. However, you might be able to live a more independent life for longer, and with possible medical breakthroughs, anything is possible.
Besides therapy and medication, one treatment you may seek is counseling. Counseling options are good for both the person with Huntington's disease and the family of the person. The one who has the disease may want to accomplish their goals before the disease takes over. A counselor can help the person formulate a plan to help achieve those goals.
On the other hand, the person may feel unmotivated to do anything. A counselor can give the person a reason for living, and help them treat other symptoms such as depression.
The family may be distressed by the idea of seeing their loved one succumb to the disease, and they may need counseling whenever the person becomes dependent on them. A counselor can teach the family member or caretaker patience, and how to check their mental health. Some are so stressed about the loved ones that they forget that their mental health is important as well.
Huntington's disease is a stressful experience with an uncertain prognosis. However, by treating the symptoms, there is hope yet. Don't let the disease take over. Live the best life you possibly can.