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