Living with PXE

PXE International seeks to help those affected by PXE(Pseudoxanthoma Elasticum) 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.

PXE Vision: By and For PXEers

With a no-nonsense approach, Pat Manson addresses tough issues that many PXEers face. Here are a few of his articles.

My First Ten Years [August 2012]
A Note to New PXEers [October 2011]
Top 10 PXE Myths [August 2010]
A PXEer's Success Story [October 2008]
Two Paths [December 2007]
What I Miss Most (about not seeing) [March 2006]
All PXE Vision articles

Medical Bulletins

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.
What is PXE?
       General overview of PXE

Get Involved

Connect with a support group office in your area.

Subscribe to PXE International's Facebook page or our PXE email lists.

Fundraise for PXE: Be a part of the solution!

Follow PXE International on Twitter for the latest news!

Do you paint? Write poems? Mold clay? Submit your artwork to PXE and Art.

Get Healthy!

Did you know the most important thing you can do to minimize the effects of PXE is eat healthy foods and exercise? Participate in PXE International's year-long Health Challenge. Watch the monthly video, challenge yourself to meet the Personal Goal and the Community Goal – it's never too late to start!  

Here are stories of PXEers who tackled the PXE International Health Challenge!
Fighting through the Challenges of Getting Healthy: An Interview with Kim Griffiths
Small Changes Lead to Big Results: How one PXEer fit getting healthy into a tight schedule

Personal Stories

Sit and Quit? Or Fight It!, by Alie Tawah

PXEer Kate Williams' Journey, by Kelly Harris

One Woman's Journey, by JoAnn DeFrancesco

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

Touching The Boat, by Jessica Harper

PXE biographies

Webinars and Video

What to Expect From a Low Vision Session
       Optometrist Dr. Jim Lundy and low vision specialist Wendy Mons conduct a low vision clinic with Marcus.
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 Boundaries, 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 Workshop
       Information about low vision testing, low vision clinics, available services and resources.

Disability and Patient Resources

Patient Advocate Foundation
National non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Genentech Access to Care
Genentech, creator of the antiangiogenesis drugs Avastin and Lucentis, is committed to patients having access to their therapies.  Through the Genentech Access Solutions program, the company provides patients and healthcare providers with coverage and reimbursement support, patient assistance and informational resources.  Patient assistance support is for those eligible patients in the US who do not have insurance coverage or who cannot afford their out-of-pocket co-pay costs.

Genetic Information Nondiscrimination Act (GINA)
What is genetic information and why is it important?  What are GINA's health insurance protections? What are GINA's employment protections?  Find GINA materials for the public and healthcare providers.

State Health Facts
A project of the Henry J. Kaiser Family Foundation, this site is a quick way to find free, up-to-date, and easy-to-use health data for all 50 states on more than 700 heath topics.

Family and Medical Leave Act
Addresses the Family and Medical Leave Act of 1993, including the text of the law, a synopsis of the law, sample forms for employees and employers, and a FAQ sheet for questions such as valid reasons for leave, notification responsibilities and employee rights and eligibility.

Disability Resources
Information and links for people with disabilities and their families, including information about books, magazines, newsletters, government agencies, nonprofit organizations, telephone hotlines and websites. Also provides a monthly newsletter.

Disability Law Handbook
The Disability Law Handbook answers questions about the Americans with Disabilities Act (ADA), the ADA Amendments Act, the Rehabilitation Act, the Individuals with Disabilities Education Act, the Civil Rights of Institutionalized Persons Act, and the Fair Housing Act Amendments.