PXE International strives to connect people with other people with PXE, the research about PXE, and with our organization in order to provide the best possible care and services to those we represent. Here are several ways you can stay better connected with PXE International and all the services we provide to support you.
Registering with PXE International provides critical data that helps nations around the world recognize that funding PXE research is important. Registration helps PXE International help you - by being counted, by participating in research. Your voice for PXE will be heard!
When you register with PXE International, you are added to our database of individuals affected with pseudoxanthoma elasticum (PXE). Your contact information will never be shared with anyone unless you give us permission to do so in your registration, and then it will only be shared with affected individuals who are interested in connecting with other affected individuals.
When one has lost vision, navigating the world can be an intimidating process. Thankfully, many people have previously experienced this, and many companies work to make the transition to new lifestyles with low vision as smooth as possible. This is a small guide to help you get started using something called assistive technologies. These technologies will enable you to navigate using your computer with much more ease. This will not be a complete list. It will simply help you begin the journey of finding which assistive technology is the best for you. This is largely about personal preference, so make sure you really test things out and get a good sense of what you prefer.
The simplest form of assistive technology is magnification software, this type of software works very similarly to moving a high-powered magnifying glass over a page. The magnifying program can magnify all types of screen objects by following where the mouse or cursor is placed on the screen. They are compatible with other types of assistive technology, in case two or more are needed to create a usable experience.
Microsoft users will need to download free software such as ZoomText or Magic. Macintosh computers have a magnification function built-in under the accessibility section of the settings menu.
The next tier of assistive technology is Screen Readers, this type of software works by reading the text displayed on the screen. These systems rely on the developer of the website or document having thought about screen readers when developing the site. If they have not thought about screen readers, then the screen reader will have a difficult time making sense of where to begin and end reading, and what sections of the page they are reading. Or, sometimes they cannot read the page at all. This being said, they are very effective when they work at completely removing any need for reading on the part of the user. You can simply allow the screen reader to speak to you about what it sees and then tell it where to interact.
Microsoft users will need to download free software such as JAWS and WindowEyes. Macintosh computers have built in screen readers that can be accessed in the accessibility section of the settings menu.
Dictation software allows people to use speech-to-text transcription. Touch-typing while vision impaired is possible, and so many people find it much easier to simply use dictation software to speak what they want to be typed and let the computer handle the rest. Some screen readers don’t work with some dictation software, so it will be an important consideration to ensure that whatever dictation software you decide on you make sure it is compatible with whatever screen reader you intend on using if any. In addition, you will have to teach the software to recognize your voice – since accents and regional differences make a difference in transcribing a spoken word.
For this reason, we cannot recommend any dictation software specifically, as it will depend on which screen reader you use and on what computer you use it on. Macintosh computers come with a built-in dictation program that can be accessed through the accessibility section of the settings menu.
PXE International hosts a closed Facebook group for those affected by Pseudoxanthoma elasticum. This group serves as community of support for PXE-ers to connect with each other and discuss their experiences with this rare disease.
Follow us on Twitter for updates, links, and more
Join our PXE Google Chat to connect with other PXE-ers, ask questions, and share stories through this email list!
PXE International sends out a monthly eNewsletter filled with the latest updates on research, fundraisers, PXE-er stories and more! Sign up to start receiving our eNewsletter here!
Where in the World are PXE-ers
The PXE International Registry includes 4,354 affected individuals. If PXE affects an estimated 1 in 50,000 to 100,000 people and there are 6 billion people in the world, then there are 60,000 to 120,000 people in the world with PXE. Help us find them and make sure to fill out our registration form if you are affected!