Married to: Mike Wheeden (editors note: amazing guy!)
Kids: Cameron 17, Zach 15 and Brady 12 (editors note: fantastic kids!)
Occupation: Director of Development, American Porphyria Foundation
I am beyond thrilled for you to meet one of my favorite people in the entire world. Since she lives in Bethesda, Maryland I haven’t had the chance to introduce you to her before but now that her story ties in with the new film Midnight Sun it seemed like the perfect opportunity! Kristen is one amazing gal. I’m not saying that just because she was one of my bridesmaids when she was eight months pregnant (though she deserves a huge round of applause for that!) but she is fun and brilliant and sweet and loyal and kind and all the best things a friend can be. I always knew she was a great mom, but she took it to a whole new level when her son Brady was diagnosed with EPP. She’s got an amazing outlook on how to manage the curve ball she’s been thrown and she’s made it her mission to help other families with similar circumstances. So while there are so many things I’d love to share about my dear friend (like her oldest son heading to college next year!) today we are going to focus on her expertise with Porphyria.
Tell us about what you do at the American Porphyria Foundation?
The APF is a patient advocacy group that serves the porphyria community. We are dedicated to the health and well-being of all individuals affected by Porphyria. We do this through awareness, patient and physician education, advocacy and relentless focus on research. There are eight types of Porphyria, all of them ultra rare. There are eight steps to making heme (which makes your blood red and carries oxygen throughout your body) – each time there is a mis-step in the development of heme, it equals a different type of Porphyria. I became involved in the APF because my youngest son lives with Erythopoietic Protopoprhyria (don’t worry, everyone has trouble pronouncing it! EPP for short). Living with EPP means that the sun triggers a toxic reaction in the blood. The result is complete avoidance of the sun – because an EPP reaction causes extreme and severe pain. Though the teen in the movie Midnight Sun suffers from a different phototoxic condition (XP) it results in the same type of sun avoidance.
What do you most want people to know about people living with this condition?
As with any condition – people want acceptance and understanding. I would like people to adjust, if they are able, to make life just a little bit easier for someone who lives with limitations. There is nothing better than when someone notices and makes a change. “Let’s walk on that side of the street because it’s shadier”, “What time are you able to go outside and play – let’s hang out then, “Let’s run to that shady spot over there”, etc., etc. And you can insert any limitation for any kid.
What advice do you have for moms of children who receive a challenging medical diagnosis?
Since I live in the world of rare disease, I’ll answer from that perspective. There are over 7,000 rare diseases affecting 25-30 million Americans, 80% are genetic, 50% affect children, only 5% have treatment…..but there is only one YOU. And you are not alone – neither is your child. Find your community, learn all you can about the disease, access the experts, keep a binder of all medical information , move forward one step at a time. You are the best advocate for your child. Be honest with them about their diagnosis, treatment, management. Let them have a “pity party” if they need, then be the one to scoop them up with a positive attitude to start a new day.
Prior to your current job, how did you find a supportive community to share your concerns, tips and advice?
I found the American Poprhyria Foundation and a community of other moms who understand. The APF was a fountain of information when I needed it the most – and now I get to do that for others. The Moonlight Mamas (our nickname for the group of moms with kids that have photosensitive conditions) at Camp Sundown were and remain a great source of support and friendship. Every year we get to spend a week at a camp where there is no worry about the weather, or being different, or caring about the sun. Just love and fun and friendship.
Tell me a little more about the magic of Camp Sundown:
Every day in our family we wake up and think about the weather. Brady plans his day, his clothing, his activities, how he’ll navigate everything about his life guided by that big round ball of fire in the sky. Camp is a place where for one whole week each year it is not a concern. He is just a kid, and no one is going to ask him to do anything unsafe. Camp is relaxing, fun, exciting – and filled with others who just want the best for their kids. Twinkly lights, campfires, games, activities, no time constraints. and great friends – pure magic! (https://www.xps.org/camp-sundown)
When you read the script for Midnight Sun were you a) happy that a porphyria-related disorder was getting attention b) annoyed that they didn’t accurately depict the condition or c) bummed that it wasn’t a better film?
It’s a teen romance movie….are there any of those that live in the cinematic history as being a good film?? Ok, Sixteen Candles still has my heart (when those limos pull away and Jake is standing there…oh my!), but I digress. I get that movie-makers must use some artistic freedom in capturing a disease – did it depict what it is really like? No. Did it create awareness? Sure did and I’ll take that. More people today know that there are photosensitive conditions that limit people. That they are just human beings who want what every teenager wants – to be accepted, supported, to have friends and fall in love.
For more information:American Porphyria Foundation