Fighting through the Challenges of Getting Healthy: An Interview with Kim Griffiths


JULY 13, 2012
By Rachel Koren
This article first appeared in the July 2012 PXE International eNewsletter

“The only thing we have to combat this disease is our health.” Kim Griffiths’ eloquent words could not be truer. With researchers still searching for the missing substrate that causes the signs of pseudoxanthoma elasticum [PXE], those affected must resort to treatments designed only to help with the symptoms while they hold out for a more effective therapy. While research runs its course, one of the most productive ways to contend with PXE is to be healthy and active.

"The only thing we have to combat this disease is our health."


Beginning in January 2012, PXE International has sponsored a monthly Health Challengeevent designed to help PXEers to take control of their health. A short video each month describes both a personal and a community goal. The personal challenges are structured to help target the important factors of getting healthy, including fitness, nutrition and motivation. The community goals challenge participants to share their accomplishments and struggles with family and friends and encourage them to join in. Participants log their monthly progress in an online participation form and through Facebook, Twitter and our Chat list.

At the end of the year, PXE International will determine a winner from those that have been sending in their health accomplishments and he or she will win $1000! Participation in the PXE Health Challenge is always rolling, and it’s never too late to start getting healthy. Newcomers are encouraged to work on the goals and submit their progress for months they missed, so in the race for a healthy lifestyle and $1000, it’s still anybody’s game.

One of the biggest challenges of making the commitment to getting fit is figuring out where to start and how to stay motivated. With the monthly challenges, PXE International has made the transition a little easier by providing creative fitness ideas as well as a supportive online community. With a busy schedule, we know that it can be hard to make health a priority, so by providing the instruction and support virtually, we have put getting healthy on your time.

When she started participating in the Health Challenges, PXEer Kim Griffiths considered herself to be an active person. She went to the gym regularly and tried as often as possible to participate in activities that got her out of the house and moving. But it wasn’t until February’s Get Moving challenge that she realized how much more active her life could be. This health assignment dared PXEers and their support communities to take 10,000 steps every single day. This is no easy task for those of us who work at a desk all day long, but with the knowledge that something needed to change, Kim worked hard to solve the problem.

“I bought a bike,” she said, “and I started riding everywhere I could, the grocery store, puppy daycare, my friends’ houses. Not only am I getting healthier, but the bike has more than paid for itself with the money I’m saving on gas.”

Kim also purchased a fitbit pedometer when she started the Get Moving challenge. The fitbit tracks the number of steps taken, stairs climbed, calories burned, and even number of hours slept. While such a device is a monetary investment, there are plenty of cheaper, and even free options that can give you the same information, including fitbit’s free app for theiphone and android.

“It really helped keep me accountable,” said Kim. With so many things on our minds, it’s easy to let healthy choices and especially exercise fall by the wayside. Especially for a busy person, new online weight loss programs and technologies can make all the difference in sticking to your goals.

Motivation is key, but it can be a challenge in itself to keep it up. It’s hard to get healthy when it seems like discouragement is all around you. Not only are you giving up time and putting forth great effort to change your lifestyle, but unfortunately the initial results are not always tangible. “It took me four months to lose five pounds,” explained Kim. “But I finally fit back into my size 8 jeans!”

"The changes you are making are having a positive effect on the inside, even if you can't see it immediately on the outside."

Kim eventually saw the results on the scale, but those first few months weren’t easy. Staying motivated through it all and sticking to her goals helped her achieve the success she was hoping for. “You have to think, the changes you’re making are having a positive effect on the inside, even if you can’t see it immediately on the outside. Knowing that kept me motivated.”

Being conscious about health is not just something that PXEers need to worry about. We hear all the time about the health issues that plague our entire country and what we should be doing to fix them. But just because you’re motivated doesn’t mean your friends and family will be too. Kim attests to the fact that it can be hard to be the only one of her group of friends to be making positive health changes. “They’re supportive because of my PXE,” she explains. “They tell me, ‘do whatever is necessary to stay healthy’, but that doesn’t mean they’re willing to change themselves at all.”

Spreading the healthy motivation and providing a support network is what the Community Health Challenges are all about. The symptoms of PXE can be a huge burden, but Kim also realized that diet and activity keep her life as normal as possible. “It’s really amazing to realize that I have a healthier lifestyle than most of my friends and family, and I’m the one with a disease.” Having support on the journey to getting healthy is imperative. You might not find it within your immediate group of friends, but the PXE community is always ready to lend a supportive hand.

"It's really amazing to realize that I have a healthier lifestyle than most of my friends and family, and I'm the one with the disease."


This year, the PXE International 2012 Biennial Conferenceis focused on promoting healthy choices in the lives of PXEers. The first day will offer free consultations with a personal trainer on how to customize your health goals to fit your life. The second day will be all about getting up and moving. A fitness instructor will lead an introductory fitness class that will inspire you to make working out part of your routine. In addition, Kim Griffiths will be leading a simple yoga practice so that everyone walks away with some therapeutic exercises to take home with them. She will specifically address balance, depth perception, healing tired eyes, visualization meditation, and controlling your breath. This is especially beneficial during eye surgery and procedures. We hope you’ll join us for these and all the other great events at the 2012 Biennial Conference on September 22-23, 2012 at the Bethesda North Marriott in Bethesda, MD. Register here.

PXE International is committed to helping you get healthy, but now it’s up to you to make the first move!