Thursday, March 30, 2023

MY TURN: Rare Disease Awareness Month is February

by RACHAEL FETTER/Guest Opinion
| February 25, 2023 1:00 AM

There’s a quote which goes like this: “When you hear hoofbeats, think of horses, not zebras.” It means you look for what is normal, not the unusual. This is why the zebra is the symbol for rare disease awareness. I am writing this article to educate my community about people like myself who deal with the daily struggle of living with a rare disease.

Rare diseases do not just affect the person with the disease; it affects everyone around them — friends, family, loved ones and the community. Rare is defined as when it affects less than 200,000 people. Rare diseases affect approximately 30 million Americans; 1 in 10 people will have a rare disease at some point of their lifetime. Therefore, having a rare disease is not so rare after all. There are more than 7,000 different rare diseases known today.

Building awareness is personal and important to me because I am part of that statistic. There is no cure for many rare diseases, and many go undiagnosed. Only 5% of rare diseases have an approved treatment plan by the FDA.

Rare Disease Awareness improves the general public’s knowledge while encouraging researchers and decision makers to address the needs of those living in our communities with a rare disease(s). Some rare diseases are Aquagenic Urticaria, Noonans syndrome, Acute flaccid Myelitis as well as Charcot-Marie-Tooth to name a few. I have talked with people that have all of these rare diseases, and I want to teach my community the names of these diseases so their family and loved ones do not feel so alone going through their medical journey.

We need more cures for people who suffer from rare diseases. One of my two rare diseases is called Aquagenic Urticaria (an allergy to water). It is a rare form of urticaria which causes hives to appear after water has any contact with the skin. It also affects me internally by causing blisters of the mouth. Take a moment and think how hard it would be to avoid water in your daily life. It is so rare that fewer than 100 cases have ever been reported. Dealing with Aquagenic Urticaria has changed my life, but it has not stopped me from living to the fullest. This disease has taught me to never take the little things in life for granted. A rare disease can manifest itself to any of us at any time with no warning; I am living proof of this. No one knows why Aquagenic Urticaria happens, and there is no cure currently. Through research, medical studies and greater awareness, I have great hope that there will be a cure one day. Please take a second to remember all of these incredible people that are fighting for their life.

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Rachael Fetter is a Rathdrum resident.

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