Retinitis Pigmentosa 101: How to Understand, Accept, and Live Your Best Life with Retinitis Pigmentosa

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How to Live, Grow, and Become Your Best Self with Retinitis Pigmentosa

Retinitis Pigmentosa is a genetic disorder that causes a person to become visually impaired and even blind. 1 in 4,000 people are born with Retinitis Pigmentosa so you’re probably thinking why would you need to write about this topic? Well the real reason is that living with Retinitis Pigmentosa or any visual impairment is a great struggle. The things sighted people take for granted like driving to the grocery store become infinitely harder for someone who is legally blind or fully blind.

There are many adaptations a person who has Retinitis Pigmentosa can use to live a happy, normal, and fulfilling life. The most important piece of advice though, is to never and I mean never think of yourself as inferior or disabled. If you start to think of yourself in that way, you will act like you are. You will feel sorry for yourself and that allows others to feel sorry for you and you will believe that you cannot do things. It is very important to know that you are capable of doing anything you set your on.

The second piece of advice that is very important is to be prepared. The National Eye Institute says that the majority of people diagnosed with Retinitis Pigmentosa will eventually lose all of their vision. Instead of living in misery and denial, you can get prepared for the inevitable. Let’s call it the apocalypse planning for blindness.

Whether you were diagnosed at two or twenty-two you need to get orientation and mobility training, learn to read braille, and learn how to use adaptive technology. Orientation and mobility is learning how to use a cane and how to navigate in the world around you without sight. You may not need a cane yet but wouldn’t you rather learn when you can see the pole coming then when you can’t and you just run into it? The main reason I suggest orientation and mobility is because you will need to be trained and assessed in these skills to get a guide dog. A guide dog is the most life changing experience for someone with vision loss. A guide dog can allow you to be independent and not have to rely on another human being to complete everyday tasks. A guide dog can save you from getting hit by a car, can make sure you don’t fall down stairs, and can make you feel safe and comfortable in any environment.

You may not be a reader, so you’re thinking, why do I need to learn braille? Really sit and think about it. How many things do you read a day? From a menu at a restaurant to directions to a new place, we have to read many things in a day. Learning braille will help you be able to read without someone else’s assistance which you will greatly appreciate when you’re losing your vision.

Lastly, learn about the different technologies around you. There is always an app that can help you read a street sign or find something you’re looking for in the store. It is a digital age so use these resources to the fullest. There’s always a new tip and trick coming from around every corner that will help make your life easier and help make you more independent.

There was a theme here. Did you pick it up? As you are losing your sight, you don’t want to lose your independence too. All of these tips can help you maintain your independence despite the fact that you are losing one of your senses. Don’t wallow in your loss but revel in the triumph of conquering your disability. You are fully capable of living your best life. Don’t let Retinitis Pigmentosa hold you back.

For more tips and tricks on how to live with Retinitis Pigmentosa, read the HowExpert book Retinitis Pigmentosa 101: How to Understand, Accept, and Live Your Best Life with Retinitis Pigmentosa.

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