PXE eNewsletter December 2017

Happy New Year!

Yes, it is the end of the year. We are most grateful for the opportunity to serve you another year. Please make a donation to support our work if you have not done so already – we need your help. Add us to your year-end donations.

Happy New Year,

The Staff: Sharon, Chris, Mary, Elizabeth, Erin, Eliza, Ian, Sam 

The Board: Pat, Lionel, Jessica, Joe, Kathy, Barb, Judy

A Message from PXEer Glenda Huyser on Vision Aids

Earlier this month we spoke with PXEer Glenda Fox Huyser about the new glasses she was sporting on our PXE Facebook group. You can see her original post here.

"My fellow PXEers For those of you who are suffering with low vision or almost no vision I hope this information will change your life as it did mine!"

After Glenda spoke about her exciting experience on Facebook, several users have reached out to PXE International wanting to know more about these glasses. We reached out to her to see if she would be interested in going into more detail, here's what she had to say:

"In 2011, as a result of PXE I lost the central vision in both eyes. At first my vision was 20/400. I was unable to read or use a computer, so then I was forced to retire. After injections in my eyes, gradually my vision improved to 20/70. I have not driven for nearly 3 years. As a musician, I was not able to read my music. I was unable to care for my family, unable to cook, unable to shop, unable to walk my dogs."

Vision loss is one of the most common and frightening aspects of living with PXE. However, like all PXE symptoms, the range of severity varies widely. While some patients may eventually become legally blind due to the loss of their central vision, others may only experience benign eye symptoms with no vision loss at all.

Data from our PXE and Life survey shows that about 90% of people with PXE do have an eye abnormality or condition related to PXE. Make sure your own data is counted by taking the survey on our website.

"My life came to a halt while I tried rewiring my thinking to try to see. I used the typical handheld devices that were available for low vision magnifiers and such and I also have the table top viewer. All of which were insufficient in some way or other," Glenda said.

"Then after a change in my pain medication, I noticed an improvement in my vision and decided, on a whim, to have my eyes checked again.

In June of 2017, I was referred to a doctor from the Low Vision Specialists of Maryland and Virginia. He said that he would be able to tell me within 20 minutes whether or not this technology could help me. I knew the moment I put the glasses on, yes, I could see again!"

For Glenda this was a life changing moment, "I can now do again all the things that I could not do because of my low vision," she said."The most difficult part for me was the wait for the glasses to be made; it takes about 4-6 weeks."

Being able to see again does take some getting used to as Glenda tells us. "There is an adjustment period, learning how to read again, how to see the whole picture without fog!" Glenda feels like she's gotten her life back thanks to the vast improvement of her vision using these glasses.

Glenda has declined to speak about questions regarding costs and insurance. You can contact Low Vision Specialists of Maryland and Virginia here on their Facebook group, or by phone at 866.269.3916

Top Smartphone Apps for Low Vision Users

Android Apps:

  1. Smart Magnifier - This app turns your phone screen into a magnifying glass.
  2. Office Lense - Turn photos into documents with this app.
  3. @Voice Aloud Reader - This app uses text-to-speech technology to read you documents and web pages aloud. 

Find more Android apps here

iPhone Apps:

  1. Be My Eyes - Connect to an assistant through live video to assist you with visual tasks.
  2. ABC Link - Allows you to connect easily with others who are visually impared or members of the American Council of the Blind.
  3. Able Road - Locate and review places near you based on their accessibility.

Find more iPhone apps here.

PXE International is not affiliated with any of these applications or their manufacturers.

Additional PXE International Recommended Low Vision Resources

This webinar shows what to expect when visiting a low vision specialist.

American Foundation for the Blind provides a comprehensive directory of services for those with vision loss in all 50 states and the 13 provinces and territories of Canada. Access it here

Learn more about how PXE affects vision by checking out our website.

Help PXE Research, Donate Saliva!

If you have PXE and have not donated blood or saliva to our biobank, we welcome your donation.

Why do we need these samples?

We will be sequencing as many people’s DNA as possible within the constraints of our budget. We are doing this because we want to start to understand which genetic mutations might benefit from one treatment or another.

Will your sample be sequenced for sure?

We do not know for sure – we will do as many as we possibly can within our budget.& 

Will we give you your results back?

Yes, though the sequencing will take several months, we will be returning results once it has finished.

To donate, please register here (if you can’t recall if you have donated already, please register and we will let you know).

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If this information was helpful to you, please consider making a quick donation today because every penny counts. 100% of donations go to support and research.