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Try to be safe

As an advocate in the HD community, it’s important to talk about COVID 19 and share the information that I was able to gather.

I have never, thankfully, been diagnosed with COVID 19, but I do have Huntington’s Disease (HD).

All of us in the HD community know that there are not many facts, education, and research related to the specific impact and effects that COVID 19 has on individuals with HD.

Until recently, we thought that only our elders, children, then anyone with medical issues could be at “high risk” to contract the virus.

The question is – Does having HD make you “High Risk”? The answer is, “sometimes.”

To understand why the answer is sometimes, let us start by understanding what HD is. HD is a neurological disease. A neurological disease on its own does not make us “at-risk” because it does not affect our immune system or make us more susceptible to the virus on its own. What does make us “high risk” are the potential symptoms we get when we have HD or any other pre-existing disease you may have along with HD.

It's an individual answer – take a look at the list below at some of the symptoms that could make you fall into the "high risk" category:

· A weak immune system

· An easy chance of catching the flu than others

· Asthma

· Smokers

· Pneumonia

· Heart Disease

· Pulmonary Issues

· Issues swallowing

· Respiratory Issues

· Diabetes

· Clearing your throat out with secretion from your lungs

· Cancer

What does that mean for us moving forward?

I recently took a poll in my Facebook Group (Huntington's Disease Education & Awareness) asking two questions (the first answered above) and the second, Do you wear a face mask?

For the most part, many wear masks. I was so happy to see that – and thank you.

You should wear a mask (especially if you fit into the "high-risk" category) when you are not at home. Even if it's not federally mandated, it is highly recommended that we protect ourselves and others.

I know that HD makes us forgetful, and I had left my mask and sanitizer at home when I ran an errand. It's ok, and don't be hard on yourself. I suggest leaving it on the rearview mirror, in your purse, or even on the doorknob. I can be that simple. Remember to wear them correctly until you are in a safe area and immediately wash your hands.

It has been brought to my attention that this pandemic has caused individuals to suffer PTSD, social phobias, and a significant increase in depression and anxiety. All these things can cause the symptoms of HD to be amplified. Remember to try and ground yourself and use your coping skills during this difficult time.

If possible, only go out when necessary. Have deliveries left at your door, and sanitize active places that people touch in your home frequently.

As it stands, we don’t know what COVID-19 can do to the body once you get it. Will it have an impact on people with HD? We do not know 100%. Since we are all individuals with our symptoms, stages, and progression, we may never find the answer. It is better to be safe.

Kids will be going back to school and others heading back to work. More people will be at risk and/or carriers of the virus. Please be safe and careful during these uncertain times.

CDC states:

If someone is showing any of these signs, seek emergency medical care immediately:

Trouble breathing

Persistent pain or pressure in the chest

New confusion

Inability to wake or stay awake

Bluish lips or face

Locations to get tested for COVID 19:



Jen Almeida
Jen Almeida
Aug 01, 2020

I am so sorry that JHD has taken away so much from you. Thank you for your support.


Robert Barron
Robert Barron
Aug 01, 2020

Good post. My wife was a JHD (passed at 26) who would walk away and could be gone for days. Our son was also JHD (passed at 19), he too would wander off jumping on city buses until totally lost would call for me to pick him up. These situations were the scariest of all in that I lost control, and they were vulnerable, and that was without a COVID to worry about. Will share your piece.

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