The Huntington's Disease Symptoms You Should Know
By: Nadia Khan
Updated May 05, 2021
Medically Reviewed By: Elizabeth Strong
Huntington's disease (HD) is quite damaging, and those who may be living with it don't always recognize the symptoms until it's too late. It's a disease that affects the brain, so the symptoms may seem mild at first, but grow more serious as time progresses. In this article, we'll be looking at the various symptoms of HD, and going into detail about what having HD entails.
George Huntington discovered this disease in 1872 after observing different families who exhibited specific symptoms. HD is a disease of the nerve cells in the brain, which causes them to break down over time. Symptoms typically begin slowly, but tend to worsen over the years, causing more problems as you age.
HD usually develops between individuals in their 30s to 50s, but its development can come earlier or later as well. In fact, there's a version of HD called juvenile Huntington's disease, which occurs before the age of 20.
HD is rare. For people who have European ancestry, the frequency of HD cases is about 3 in 100,000. If you just stumbled on this article, don't fret. The likelihood that you have it is low, especially if there is no family history of HD.
What's The Cause?
HD is not contracted, but inherited. If you have a family history of HD, you're more prone to getting it, but not at a 100 percent rate. HD comes from a gene that mutates before birth. If one of your parents had a defective gene, there is a 50 percent chance that you may have it as well. A flip of the coin.
Symptoms Of Huntington's Disease
Those who want to know more about HD probably want to know what symptoms they can expect. Each case is both unique and similar at the same time. The amount and frequency of symptoms can differ from person to person. However, one thing is certain: HD will get worse as time goes on. It affects how you move, how you think, and how many mental conditions you may have.
Those who have HD usually have involuntary movements, such as sudden jerking or writhing. We've all had hiccups where we jerk ourselves or shoot up while we're trying to sleep, but those with HD will have involuntary movements all the time. People with HD may also have trouble with:
- balancing themselves
- swallowing foods
- mouth movements while speaking
These movements can affect your life greatly. It takes one accidental movement to lose your job, cause injury, or even lead to death. Those who live with HD need support as their involuntary movements worsen over time. Their friends and family members need to be patient and be on the lookout for any involuntary movements that may occur.
Those who have HD will experience cognitive impairments as the disease worsens. These include:
- Difficulty focusing. This is more serious than having a day where you feel unable to maintain concentration. There are many reasons why you may have difficulty focusing, but HD can be a sign as well.
- Those who have HD may get stuck in a thought, or just mentally freeze. Again, everyone has their brain hiccups, but those with HD may experience them more frequently.
- Someone with HD may have poor impulse control. Everyone's impulse control is different, but if you have had good impulse control before and it suddenly worsens, then it may be a sign of HD.
- Those who have HD may have less self-awareness and be unable to critique themselves.
- Those with HD may not be able to retain new information as easily.
Again, our brains make hiccups from time to time, and if you have trouble focusing occasionally, you shouldn't panic. However, it may be worth seeing a doctor if you experience many of these symptoms on a frequent basis.
Those with HD may experience psychiatric disorders as well. These include:
- Depression. HD can change the chemistry of your brain, causing depression. Also, those with HD may experience depression associated with their response to the disease.
- OCD. If you’d never experienced obsessive-compulsive disorder and you suddenly find yourself exhibiting OCD-like tendencies, this may be a sign of HD.
- Bipolar disorder is another mental condition that can arise. You may feel depressed one day, and then feel manic the next.
Symptoms Of Juvenile Huntington's Disease
Though it is very rare, Juvenile HD can occur, and those who have it may experience worse symptoms. The disease tends to progress faster when onset begins at a younger age.
- Behavior and school problems. It's common for a teen or child to have these, but if it was sudden, and not caused by other factors, it could be JHD.
- Being forgetful is another sign of JHD. Again, children can forget about things, but if your child is forgetful all the time, and there doesn't appear to be another cause, JHD may be to blame.
- There may be physical changes. The loss of motor skills is common, and so is muscle contractions and tremors.
- Seizures may occur. If there is no other cause for the seizures, such as epilepsy, it could be a sign of JHD.
As you can see, a lot of the symptoms are common childhood struggles. Because of this, it may take a while before the child is diagnosed. If your child has any of these symptoms, it would not hurt to take them to a doctor in order to make sure that JHD is not the reason.
Over time, HD gets worse, and those who have it may wonder how long it will be until death. Death due to HD, or an HD related symptom, is essentially a certainty. There is no cure, or any way to reverse it. However, the amount of time someone with HD has will differ. Sometimes, those with HD can live 30 years after they were diagnosed. If you were diagnosed with HD in your 40s, you may be able to live a full life still. However, you may also have 10 years to live. Those with JHD tend to have shorter lives.
HD is fatal because it not only destroys the brain, but its symptoms can also lead to death. This can usually occur before the total loss of brain functions. Many of us do not want to live without being in a full state of mind.
Because those with HD have trouble with balance, death can be due to falling. HD can also cause you to have trouble swallowing, meaning that death by choking can happen as well.
Treatment Of Huntington's Disease
Although there is no cure and no way to stop or reverse deterioration, there are ways to slow down HD, or help treat its symptoms.
Depression caused by HD can be reduced through antidepressants. If you're having trouble with movements, there is medication to help with that too. The rarity of the disease makes the demand for a pill more difficult, but there are some promising treatments on the horizon.
Physical therapy is another way to treat HD. If you are constantly going through therapy for difficulty moving, it may be able to help you slow down the loss of your motor skills and help you live a more independent, healthier life.
If you have HD and want to have a child, you may wonder how you can lessen your chances of spreading it to your child. Some may adopt or have a child through a donor egg. However, there is a way for you to have your own child that doesn't have HD. Genetic counseling is one solution. Counselors can help you determine how much at risk you are of passing HD to your child.
Also, people may utilize a preimplantation genetic diagnosis. Embryos are grown using the parent's DNA, and they are tested for HD. If the embryo lacks the mutated gene that causes HD, it's planted in the mother's womb.
It's a bit debatable if this is the right way to prevent HD, and some may have ethical concerns about the practice. However, for many aspiring parents, it's the only way to have a child that's genetically theirs without passing on the disease.
There is an increasingly large amount of research pointing to online therapy as a useful method of treatment for individuals experiencing psychological issues arising out of diseases like Huntington’s. According to one wide-ranging, comprehensive report, online cognitive-behavioral therapy (CBT) is at least as effective as face-to-face therapy when treating an array of mental health issues. In the report, published by the World Psychiatric Association, researchers outline a number of benefits, noting that online CBT can be more closely tailored to the needs of individuals, and also that it eliminates geographical limitations. CBT is a widely accepted method of treatment that helps individuals replace intrusive thoughts that may lead to negative emotions or behaviors, such as those associated with experiencing (or taking care of someone experiencing) Huntington’s disease.
As discussed above, online therapy can help those with the disease cope and live the best life possible, while the caretakers can learn to be patient and be less stressed about their family members. With online therapy through BetterHelp, you’ll have access to counselors from all over the US (and beyond)—not just those therapists who are operating in your area. With more options, you’ll have a better chance of matching with someone who fits with your preferences and can address your specific concerns. The licensed professionals at BetterHelp know how to guide you on the journey to a healthier body and mind. Read below for reviews of counselors, from those who have experienced similar issues.
“I'm just a few sessions in with Joe and I can't express how grateful I am to have been matched with him. I feel completely comfortable sharing with him and he has already helped me with some exercises and tools to work through my pain. He is extremely empathetic and kind. I'm optimistic about what will come as we spend more time together.”
“I appreciate Linda’s genuine concern for helping me live a better life for myself and my family. She is honest, responsive, and understanding.”
If you or someone you know is experiencing HD, or cares for a family member with it, you know it can be a difficult road. HD is a disease that can get worse with time, but by being prepared, you can live the best life possible.
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