What is Usher Syndrome?

Good afternoon readers!

Today we will explore one of the leading causes of acquired Deaf-Blindness.

First; what does Acquired means? Yes? You there; Miss Granger?

“Well, it means to get something, you need a broomstick to play Quidditch, so you would go out and buy one.”

Yes, that is the basic idea. But if a person was acquired animagus, can you explain that? Yes, Miss Granger?

“The person learns to become an animal, and it takes years and years to learn and practice.”

Quite true, practice and practice can turn you from a girl into a, say goat. Of course, one cannot choose a whole range of animals to change into, but just one!

Now, can you connect between Acquired Animagus and Acquired Deaf-Blind? No one? Miss Granger has, for the first time ever, failed to answer.

It is really quite simple: A person who is acquired Deaf-Blind has lost both vision and hearing, so such a degree that they need to learn other alternative ways to communicate. The person either is born Deaf and loses vision, or born hard of hearing and loses both hearing and vision.

But, need to say, one cannot buy Deaf-Blind. No, Amazon nor Borgin & Burkes do not stock Deaf-Blind.

So, Acquired Deaf-Blind is all about becoming Deaf-Blind, usually in late teens and onwards. The only thing a Deaf-Blind person is learning is how to live, survive, enjoy life with a dual sensory loss.

Moving on, what is opposite of acquired Deaf-Blind? Yes, Miss Granger?

“Would that be congenital?”

Right on! And that means… Oh fine, enough with the Harry Potter connections! I am sure JK Rowling is going to send me a big lawsute tomorrow! Ahh the publicity!

So, congenital means born with a specific trait. For example: there are people who are born with 6 fingers, a hole in heart, affluence, blue eyes, small nose, red hair among many many traits … and deafblindness!

With those who are born deafblind they need to learn to communicate their basic needs, and it takes a long time. I am, I’ll tell you now not an expert on those born deafblind, so, I won’t talk about this group.

Returning to acquired Deaf-Blind, there are many different conditions that can lead to a loss of both hearing and vision to such a degree that the person becomes Deaf-Blind.

The most common form of acquired Deaf-Blind is Usher syndrome, which is a genetic condition that affects the Vision and Hearing of affected persons., yet there is three types of Usher; Let me succinctly outline each;

Usher Type 1, or simply Ushers; refers to individuals who are born profoundly Deaf and will start to lose vision in late teens, early adulthood, first with night vision loss, then with tunnel vision. As the person ages, their tunnel vision may get smaller, and even collapse entirely. Because the person is born Deaf; they would usually attend Deaf Schools, learning and mastering ASL, and have many Deaf friends.

Usher type 2: individuals are born hard of hearing, which usually remains static for life. As with Usher 1, vision deteriorates in late teens, slowly; first night vision loss then tunnel vision. Because this group is predominantly hard of hearing, they will usually attend normal classes at school, using hearing aids. Their objective would be to use their hearing to the best of its ability, they would not normally learn ASL. Then, when their vision starts to deteriorate to such a point, they may feel more alone and connected to hard of hearing group, or blind groups.

Usher type 3: is a local phenom, really, the person has progressive hearing loss, and, I guess, vision loss as per the others. It found only within specific areas of the globe, interestingly!

Usher syndrome is just ONE form of genetic deafblindness; there are scores of conditions, causes, syndromes – one being CAPOS! – that can lead to a lose of both Vision and Hearing.

I want to close this blog by saying that, as per almost everyone else on this planet, each Deaf-Blind person has different degree of vision loss, hearing loss. So every Deaf-Blind person is different, unique, yet, the common demoninator is each person who is Deaf-Blind their vision cannot be improved to the point where they can drive in the Indianapolis 500. Nor would their hearing be ameliorated to the point where they could have conversations with 5 different peoples at the same time, and still hear the baby crying in the room downstairs across the street. A

A Deaf-Blind person’s vision and hearing cannot be fixed, it can be improved, but never fixed.

Thank you for reading!

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