By Amy Brady

I have pulmonary arterial hypertension (PAH). Like many living with the disease, I take several medications. Thankfully, my doctor was able to keep my PAH controlled with oral medications. My daughter isn’t that lucky. She was diagnosed with PAH her sophomore year of high school. She now has a subcutaneous pump that injects medicine 24 hours a day. Her diagnosis has robbed her of the experience of just being a teenager — including planning for college and  her career. She’s no longer allowed to swim and she will never be able to know what it is like to have kids.

I’m one of millions of individuals would be affected by the loss of patient protections like coverage for pre-existing conditions and a ban on lifetime benefit caps. You never really understand this type of hardship until it falls in your lap. Managing chronic illness for one person is hard enough. It is extremely difficult for two people under one roof to deal with this disease. The medication, doctor visits, co pays, etc. — it is overwhelming. Congress, please take us into consideration when making decisions about our future.

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Amy Brady (mom) Gabrielle Brady (daughter)

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This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.