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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bayer, United Therapeutics Corporation, Acceleron, CVS Health & PhaseBio Pharmaceuticals.

Madison Wegener - phaware® interview 306

Jan 28, 2020

We are heartbroken that our friend, Madison Wegener, lost her battle with PH on January 19, 2020. In this episode, Madison discusses the importance of awareness, research and why she loves PH Conference.

My name is Madison Wegener, I'm a pulmonary hypertension patient.

I think it's really important to make people aware so that way it's more fundraising because you kind of need the money for that, because it is kind of a lot of money and it's a hard thing to deal with. I found it kind of made me a bit stronger. I don't know, more sensitive kind of. I'd kind of say, find a support group. Find friends. It's definitely a lot more helpful. Try and go to conference if you can.

I remember my first time here, it was so nice seeing someone else with it because like I said, it is a hard thing to deal with so you kind of need someone there. You have your parents but then they're also dealing with it and it's kind of nice to have someone who knows what you're going through.

It's kind of easier not to be mean or anything, but they understand it in [that] you're restricting yourself. Your cousins might want to be like, "Hey, let's go run." I remember in elementary it was really hard for me, because everyone would play tag and everything and I couldn't do that. Maybe someone else who had it, they're slower and they're more my pace. That's why I love conference so much, because it's only, it's barely that much if you think about it and it's to just see your friends that much. That's not a lot. Not everyone can always come. Timing doesn't always work and stuff. Sometimes you don't even get to see them so anytime you can you want to.

I remember when I was diagnosed I was really into gymnastics and I did that with my other friends. But since I got a pump and everything that threw me off balance so that was kind of off the list. It kind of forced me into learn a lot of other things. I like the woods, my grandparents own a property and we go up there a lot and do maple syrup and stuff. I've started archery, horseback riding. I haven't really settled into anything yet. I'm still kind of exploring places, but it's definitely made me more, I guess, adventurous you could say.

I learned how to change my own dressing. I've tried learning how to mix my medicine, but it was over the school year and that's kind of a lot at night. I only know how to change my dressing. I know the name of some of my pills. I should probably be better at that, but I'm not. I'm working on it though.

My main tip would be trying to tell people and make them understand and be like, "Hey, I really can't do this." Your friends, sometimes they understand, sometimes they don't. When you get older they do definitely. And just try and get to conference, try and make friends that do have PH because it's definitely helpful.

My name is Madison Wegener and I'm aware of that I'm aware.

Please join the Wegener Family for "Madison's 5K" on May 16 in Dewitt, MI to honor Madison's legacy and making Madison's dream come true by ending the suffering of these PH kids and finding a cure.  You can also read more about Madison on her CaringBridge page. 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials