PXE eNewsletter February 2018

February - What We Love: Staying Active!

Through PXE LAB, Facebook, and email, many of you expressed interest in understanding your leg pain better. Those calf cramps often felt by people with PXE when exercising? That's called intermittent claudication. Intermittent claudication is one symptom almost everyone with PXE experiences, but it's not yet been widely studied.

After watching the 2018 Winter Olympics this month we are excited to get moving! We will be launching a study later this year focusing on better understanding this PXE symptom and we are excited to have you participate.

In the meantime, here's a list of low impact activities that you can do to stay active!

  1. Walking: Adding just 20 minutes of walking to your day can improve your health! Walking regularly promotes heart health as well as improved memory, mood, and sleep.

  2. Swimming: This activity can be a great way to get in extra cardio, especially as the weather starts warming up. It's also a very low impact exercise, so swimming can help you increase your activity without overdoing it.

  3. Yoga: Doing basic yoga can improve flexibility, mental health, and reduce stress levels. Check out these videos for beginners!

What are your favorite ways to stay active? Join our Facebook group and let us know how you move!

Veggie/Vegan Study

Many of you shared about your lifestyle as a vegetarian or vegan and how you believe it has impacted living with PXE. Can living a vegetarian or vegan lifestyle lead to fewer PXE related symptoms? We are asking all PXEers to take this brief survey about your eating habits, to help us answer this question.

We've had a great turnout for this study and we will be accepting answers until February 28th. If you'd like to participate before it's over click the link below!

Have you ever been vegan or vegetarian? Answer Here!

PXE & Life

As work on clinical trials heats up the need to have PXEers take our PXE & LIFE survey increases! Get started today and be a part of the latest PXE discoveries!

If you need assistance please reach out to Sam Coley. She's available by phone at 202.362.9599 x222. Or you can send her an email at scoley@pxe.org and she will be happy to help you complete the survey!

Click here to get started

Announcement: Office Hours

Because of the positive reaction to our Virtual Meetings we have decided to set monthly Office Hours. During these Office Hours you will be able to connect with PXEers around the world, ask questions, and speak with members of the PXE International team. We'll announce the first dates and times soon, so stay tuned!

pxe office hours graphic


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.