Artist Spreads Usher Syndrome Awareness

When Krista Webb was just two years old, doctors determined that she had some level of hearing loss. Her family was surprised about this; nobody else in her family, and not even throughout her family history, had experienced any level of deafness. Then, shares North Texas Daily, Krista began having vision issues when she turned nineteen. After comprehensive testing and speaking with a retina specialist, Krista was diagnosed with retinitis pigmentosa (RP), a retinal degenerative disease. In combination, deafness and RP are called Usher syndrome. 

Since her diagnosis, Krista has fallen into a path that she truly loves: art. More particularly, Krista does wood-burning (pyrography), or free-hand decoration of wood (or other materials) using burn marks from a controlled application. Not only has Krista found comfort in her art, but she also uses it to raise awareness of what those with rare conditions or disabilities can do! 

Krista’s Story

Today, Krista’s vision has declined to the point of legal blindness. On her Instagram page, where she sells some of her pyrographic art, she explains that she is both legally blind and deaf (unless she has her hearing aids in). 

She has been making art with pyrography for the last two and a half years. Altogether, she finds the process relaxing – a chance to just sit back, breathe, and relieve herself of any negativity.

Krista sells this art either on Instagram or in her Etsy shop, “Blind Love Wood Burning.” Initially, she began selling her work in 2021 to connect with the community and inspire others. To take a look at what she has created, or to purchase a piece, click here

Krista explains that part of why she has put herself out there so much is to show others that they are not alone. That to have a disability is not the end of their life, that they are still important and capable of so many things. She says:

Find that outlet, that passion and…do it not just to please others, but also to please yourself.

What is Usher Syndrome?

As described above, Usher syndrome is a genetic disorder characterized by deafness paired with retinitis pigmentosa. There are at least ten genes associated with Usher syndrome, including USH2A, WHRN, HARS, USH1B, and CDH23. Individuals with Usher syndrome inherit these genes in an autosomal recessive pattern, meaning they must inherit two defective genes to have this disorder. Altogether, there are three subtypes of Usher syndrome, all characterized by hearing loss. In Type I, which typically manifest by age ten, individuals experience balance and vision problems, as well as congenital deafness. Next, Type II is characterized by moderate-to-severe hearing loss at birth as well as night blindness, which occurs in late teens to early twenties. Finally, Type III typically has late-onset hearing loss, balance issues, and RP occurring between the 20s-40s. 

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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