What Should I Do if I’m Showing Signs of Huntington’s Disease?

Huntington’s disease does not affect every person in the same way. You can show signs similar to that of Huntington’s disease without actually having the faulty gene. Some people have problems with the mobility of their body parts, some find it difficult to remember things, and others can’t control their moods, feelings, sensations, etc.

I am guessing you did some internet research to find out more about your symptoms and came across a webpage revealing signs of Huntington’s disease. You are doing the right thing by digging even deeper into it, most people would be terrified of confronting this deadly disease.

The next logical step would be to go for a genetic test to confirm whether you have the huntingtin gene or not. There are two types of genetic tests available 1) Predictive and 2) Diagnostic.

Predictive testing is for those who are living in fear of inheriting Huntington’s disease from one of their parents. Diagnostic testing is for people who are already showing symptoms of Huntington’s disease and require an official diagnosis.

A center of excellence will help you mentally prepare for the disease before the test results and make sure formalities like life insurance, long-term care insurance, etc are taken care of.

Let’s dive further and examine how a Diagnostic genetic test can help you make sense of the physical/mental/ emotional signs you are showing of having Huntington’s disease. A diagnostic test will confirm whether you have Huntington’s disease or not. You would want to know the results as soon as possible so that you can plan your future based on them. [1]

Should I marry?

Your partner will have to spend the rest of his/her life taking care of you, and possibly alone after you are no more. You can avoid this predicament by being entirely responsible for your situation and taking every life decision based on your genetic test results— whether it arrives as positive or negative.

Testing positive does not mean the end of the world. There are plenty of viable treatments available for the symptoms of Huntington’s disease. These treatments are designed to make a Huntington’s disease patient’s life easy and pain-free.

There is no cure for Huntington’s disease yet, and no amount of treatment will reverse the course of this disease. However, scientists are working tirelessly to come up with effective therapies and medications to reduce cognitive decline in Huntington’s disease patients. Read my other article if you want more information on this subject.

Who should opt for Diagnostic Genetic Testing?   

A genetic test becomes mandatory for patients with positive family history and showing specific motor symptoms. But such patients are generally unconscious of their ponderous movements and shifts in behaviors in the early stages of the disease.

So normally their family members or friends notice these subtle changes in them and begin wondering what could be wrong with their loved one. It is common for such an unaware Huntington’s disease prospect to deny any kind of accusations of being uncharacteristically weird.

For this reason, it is important to understand the patient’s situation by stepping into their shoes and interacting with them in an empathetic way.

Join a support group

Since this is a rare disease, and not a lot of people know about it, it is challenging for a patient to find others going through the same situation. In this phase, you must share your feelings with others who have been through it. And luckily, there’s help available out there. All you have to do is reach out. 

Everyone knows that the best support group is your family and close group of friends. But when you have HD, and you are showing symptoms, it is best to keep family and friends at arm’s length for as long as possible. Why? Because you don’t want them to worry about you all the time. And it is good to be self-dependent as much as possible. 

This is where support groups come into the picture. You can join a general (Dementia, or rare diseases) group, but the Huntington’s Disease Society of America (also known as HDSA) has support groups for people with the HD gene. Your caregivers or family members can also join the group. 

Here’s the link to find HDSA Online Support Groups.

Conclusion

It’s very natural to panic when you suddenly begin to shake, walk with jerky movements, find it hard to swallow food, become stiff and rigid, etc. When all this is happening out of nowhere, without any prior warning, it is imperative to remain calm and think logically. A genetic test to determine such a fatal disease requires you to be mentally prepared to handle the inevitable.