I’m Aware That I’m Rare: Cheryl Wegener (307)

The phaware® interview

We are heartbroken that our friend, Madison Wegener, lost her battle with PH on January 19, 2020. In this episode, Madison ‘s mother, Cheryl discusses the importance of early diagnosis, the impact PH has on the entire family how journaling became a teaching tool for everyone in their lives.

My name is Cheryl Wegener and I’m a pulmonary hypertension caregiver.

In my opinion, pulmonary hypertension awareness is critical because it means so much to early diagnosis for people like my daughter and others like her. So many times people go so long with misdiagnosis, symptoms that go unchecked, that sort of thing, and so being aware of that just ultimately will save lives.

Day one into our diagnosis, I wish I would’ve had a better understanding of the disease and what its implications meant for not only my daughter, but for myself, for my son, for our entire family. So tips, as far as going forward, I would definitely say you absolutely have to find a support network, whether it’s an online support network…