Living With PXE

PXE International seeks to help those affected by PXE to continue to live happy, healthy, productive lives. Below you will find links to many different resources to assist you in your understanding of the condition and how others have integrated this diagnosis into their lives. Stories from fellow patients, informational videos, and a plethora of other articles are brought together to help and remind us of all the possibilities of this disorder.

Tell us how you live with PXE!
Participate in the epidemiological research study going on now.
Find out more!
 

Resources

PXE Vision: By and For PXEers
       With a no-nonsense approach, Pat Manson addresses tough issues that many PXEers face.
PXE and the Primary Care Physician
       What is due to PXE, and what is not? A medical bulletin to educate doctors on how people with PXE
       should be followed.
Disability and Patient Resources
       Additional resources to help with health insurance and employment protections, Avastin and Lucentis
       coverage, reimbursement support and more.
PXE Medical listserv 
       Have a medical question? Get it answered through our PXE Medical listserv.
 

Get Involved

Connect with a support group office in your area.

Talk about your experiences on Facebook or the PXE listserv.

Fundraise for PXE: Be a part of the solution!

Participate in research: donate your clinical information!

Follow PXE International on Twitter for the latest news!
  

Personal Stories

 One Woman's Journey, by JoAnn DeFrancesco

Two Paths, by Pat Manson

A PXEer's Success Story, by Pat Manson

Embrace the Change, by Jan Nesset

Arizona Department of Economic Security: A Resource for Low Vision Tools, by Charles Harper

Give Sorrow Words, by Charles Harper

What I Miss Most (about not seeing), by Pat Manson

Touching The Boat, by Jessica Harper

Webinars

Own Your PXE
       Steps to help manage your PXE.
US Insurance Issues: SSDI and LTD
       Navigating the world of disability benefits.
Building a Career Without Boudaries, Part 1
       Tools and techniques to acquire the right position: when to disclose your disability, tailor your resume,
       and more.
Building a Career Without Boundaries, Part 2
       Tools and techniques to acquire the right position: valuable interview tips, the hidden job market
       and success stories.
Low Vision Session
       Information about low vision testing, low vision clinics, available services and resources.