Tools I use on a daily basis

Here are a couple more pictures of the instruments I use everyday to help me see, and read better: Below is a better view of my pocket magnifier





I also use a specialized desk lamp with a large, round magnifier attached. This helps me to see my textbooks, magazines, handouts, scriptures, and other reading material(s) better. When my eyes don't have to work as hard to see the text, it creates less of a strain on my retina, allowing me to read for longer periods of time without getting tired, distracted, or bored. I have found this, along with my other aids that I mentioned in another post extremely useful in the maintenance and management of my RP.

My little helpers. Actually, I consider them more than that. They're basically lifesavers!

My personal experience

Over the course of one's life, it is easy to become stagnant or neutral when it comes to educating one's self on living with and managing a particular disease. Once you think you know it all concerning a topic, you learn something new, or become aware of new technology that can treat your condition in a way you never imagined possible. You might possibly even meet people with similar backgrounds or conditions as you, which can be used as motivation to keep fighting, to win the race we call life.

I would just like to inform you on what has happened with my fight against RP over the last 6 months or so. After my regular visit to my eye doctor, he referred me to a low vision specialist here in Utah County. After meeting with this wonderful man, Bryan Gerritsen, I determined it was time to take action and make the necessary steps that would enable me to "step up my game" when it came to doing my schoolwork more efficiently, and using the tools that are out there to better manage my condition

Here are a few of the visual aids I use to help manage my RP: beginning from top left, you can see a pocket magnifier that has a built-in LED for studying during all times of the day and night. It puts less of a strain on the eyes, enabling me to concentrate longer when needed. Next up, is a self-titled "monocular". As you can probably guess, this instrument helps me to see things more clearly that are at a distance, but when you turn it around and look through the other end, it expands my field of view, which can come in handy in many situations. Finally, I have a lens attachment that simply clips onto my glasses. This brings my reading material closer to my eyes without physically moving the book, magazine, or computer closer to my eyes.

Over the years...

In case you hadn't already clued in, the very author of this blog suffers from RP. Now, I'm not asking you to feel sorry for me, but I wish to simply educate my peers on the condition I have just to try and understand where I'm coming from, or viewing it from my perspective. I have had the symptoms of this disease since childhood, so basically for as long as I can remember. I've worn corrective lenses since preschool, and the one time I tried to wear contact lenses, my eyes did not cooperate with the idea of trying to rest small, clear lenses onto my eyeball.

I've always been a good student, but I have had to learn in various different ways, relying more on the assistance from others than is noticeable. On a sidenote, I don't always sit in the front of the classroom, mainly because of perceptions of students who sit there (partially joking), but I don't always like sitting in the back either. It's difficult for me to read the board at that distance, and I believe there are more distractions, and it's much easier to slack off and not pay attention to what's being taught.

Saharan Trek

During the week of March 8-14, members of the group "RP Fighting Blindness" (A branch of The British Retinitis Pigmentosa Society) completed an over 62 mile trek across the great Sahara Desert. This may sound like an absurd idea, but when one realizes the cause involved, it seems like it was well worth it.

The objective of the so-called "RP challengers" was to raise money for research of this debilitating disease, and that is exactly what they did! It amounted to somewhere around $85,200 when factoring in currency exchange rates. Now, this may not sound like an overwhelming number, considering the large amounts you normally hear associated with cancer donations and other monetary figures. However, this will definitely help contribute to the cause of saving the eyesight of many people around the world, if not now, at some future time, and that's the positive outlook we should be hoping for and attempting to achieve.

To view RP Fighting Blindness CEO David Head's pictures from the trip, click here.

Yearly visits to the eye doctor

It has been recommended by the American Optometric Association that you get your eyes checked at least once every two years for those under the age of 60, and twice yearly for those over 60. They will be able to tell you how your vision is looking (pun intended), and how to properly maintain excellent eyesight.

If you are having trouble seeing, you may need more frequent checkups to monitor your status. It is important to be careful concerning matters of the eye, and it's a very sensitive subject for a lot of people. If you are having trouble with your vision, do not be ashamed or embarrassed about it. This is why eye doctors exist, is to help you in your time of need. It is better to be honest with your doctor than simply trying to impress them with how well you can read the chart with all the letters on it, or rush in to be seen just so you can cross it off the yearly checklist. Your vision is too important to be deceitful or deceptive about!

BBC morning news program

Watch this video of Jonathan, a resident of London, who is capitalizing on possible treatment of his RP.


Stories such as this one offer hope for a brighter future for those who suffer from RP. Any progress that is made can be considered good progress, and a step in the right direction.

Frequently Asked Questions

What is RP?
It is a progressive group of eye diseases that cause(s) the retina to deteriorate in structure and function.

What does it do? How exactly does it work?
Everyone has distinct photoreceptor cells in their eyes, namely rods and cones. Rods deal with peripheral vision as well as night vision. Cones, on the other hand, help an individual to experience clear central vision and to differentiate and distinguish colors. When RP is in full effect, the rods transform into foreign genes, causing progressive loss of the visual field.

How does one get RP?
It is a genetic disease and can be passed down from one or both parents

How common is it?
Approximatey 450,000 people in the United States are inflicted with retinitis pigmentosa

What are symptoms to look out for?
The two most common are night blindness (slow adapting to dim light) and slow, progressive loss of peripheral vision

Are there levels of diagnosis?
Yes. RP can be diagnosed as mild, moderate, and/or severe

Are there any common practice treatments available?
Not currently, as opthalmologists and low vision specialists are trying to understand and investigate the disease to learn more about it and ways to combat this chronic illness

Is there a cure?
No

What should I do if I am diagnosed with RP?
Wear sunglasses in bright sunlight to help protect your eyes from prolonged UV exposure. Also, it is common to meet with a low vision specialist to discuss possible remedies such as visual aids, reading glasses, light fixtures, and other potential ways to help manage the disease

Will the end result be complete blindness?
Not necessarily. Depending on heredity, as well as maintenance of the disease, the process of becoming blind is different for everybody with RP. Severe tunnel vision is the end result in many people, but others can lead a normal life, with full visual capability throughout their lifetime.

Intro to RP

Retinitis Pigmentosa, commonly abbreviated as "RP", is only one of a numerous set of progressive, genetic eye diseases that affects more than 400,000 Americans each year.

The purpose of this web-log is to inform, educate, and empower the reader as to the background of the condition itself. This will be done by showing potential warning signs, effects on daily living, steps in diagnoses, effective treatment options, links to external sources, exerpts and advice from individuals who suffer from this disease, and other useful tips and nuggets of information.

I hope you find this blog informative and useful, because you never know who may be suffering from this debilitating disease around you!