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Rare Disease Day and ADOA: Here's What You Need To Know

Rare Disease Day and ADOA

Today, on Rare Disease Day, advocates across the world are working to bring awareness to the rare diseases that affect the important people in their lives. One of those diseases is Autosomal Dominant Optic Atrophy (ADOA). This disease touches everyone in the ADOA community – either we are living with it ourselves, or our loved one is. However, there are many people who may not understand what ADOA is and how it affects those who have it. Our purpose at ADOAA is to shed light on this disease and provide you with the tools you need to explain its affects to others.

February is also Low Vision Awareness month, which provides a key clue as to what ADOA is all about. ADOA is an inherited disease that deteriorates the optic nerves. The death of the optic nerves causes blindness, vision loss or impairment. Those who inherit ADOA start experiencing symptoms early in childhood – often between the ages of four and six, but even as early as one. And while the disease does not typically lead to complete vision loss, it can lead to legal blindness. The disease affects each child differently, some will experience symptoms such as muscle atrophy or hearing loss with their reduced vision. 

Unfortunately traditional glasses and contacts cannot improve the vision loss caused by ADOA. To date, no cure has been found, but scientists and researchers are working diligently to change this. A mitochondrial dysfunction mediates the death of the optic nerve fibers in those who inherit ADOA, making this disease similar to many other rare mitochondrial diseases. Therefore when treatments and cure advancements are made in the field of ADOA, it helps not only those suffering with this disease, but with many other diseases as well.

There is plenty more to learn about ADOA and what our organization is doing to help fund research for a cure. Join our mailing list if you haven’t already, to receive updates on recent developments and upcoming events. Or send us an email if you want to know more about how you can get involved or share your story.

Today and every day, we hope you’ll join us in educating others and spreading public awareness of ADOA.


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