Courage Is Necessary When Making Difficult Decisions

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by Jaime Christmas |

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journaling for caregivers | FAP News Today | Main graphic for the column

It has been a week since my husband, Aubrey, and I received our first doses of the COVID-19 vaccine. We feel fortunate to have this opportunity as New Zealand’s Ministry of Health continues its nationwide vaccine rollout.

Aubrey suffers from hereditary ATTR amyloidosis, and his condition has considerably worsened since his diagnosis in 2013. He received a liver transplant in 2016, and because of the immunosuppressants he has to take, he has a higher risk of contracting COVID-19 and experiencing severe disease as a result.

People seem to have polarizing opinions about getting vaccinated. We shouldn’t discount the concerns of those who are hesitant to receive the injection. As the leader of an amyloidosis patient association in New Zealand, multiple health-compromised individuals have told me that they are anxious about getting vaccinated. Their feelings are valid. I tell those who are burdened by this decision to listen to expert advice, then make a judgment call that they can live with.

The U.S. writer and poet Ralph Waldo Emerson once stated, “Whatever course you decide upon, there is always someone to tell you you are wrong. There are always difficulties arising which tempt you to believe that your critics are right. To map out a course of action and follow it to an end, requires some of the same courage which a soldier needs.”

There has never been a more deserving time to call on courage than now. Whether or not the issue involves vaccinations, we will always face situations that challenge us to find fortitude in the choices we make.

Aubrey and I had no say in his affliction, but we can certainly help determine the extent to which the illness impacts our lives. Because Aubrey’s disease has no present cure or proven treatment, we are placing our confidence in the pharmaceutical companies that have created a vaccine to help prevent people from contracting COVID-19 and experiencing a potentially fatal outcome.

We are ardent supporters of safe clinical trials. We believe that trials are the best way to learn valuable information, and that they are an important step in discovering new treatments for rare disease sufferers. Making important decisions takes courage, but it’s also necessary.


Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.


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