Tagged: advocacy, caregivers, Newly diagnosed, PH Questions
- This topic has 1 reply, 2 voices, and was last updated 1 year, 3 months ago by
Jen Cueva.
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April 13, 2021 at 3:07 pm #29706
Colleen Steele
KeymasterI just shared this information under the topic “No One Thinks I’m Sick”. You can view that discussion here.
I’m making these resources it’s own topic so we can easily refer newly diagnosed patients to them.There are a number of resources that helped my family help others understand our son’s disease.
1) Printable PH wallet cards. We handed them out like they were candy.
https://phassociation.org/wp-content/uploads/2020/10/AM20_WalletCard_Printable.pdf2) More resources to download for patients and their family.
For Patient: https://phassociation.org/wp-content/uploads/2017/05/FREE-MATERIALS-PDF-The-New-Normal.pdf
For Caregiver: https://phassociation.org/wp-content/uploads/2017/05/FREE-MATERIALS-PDF-Guide-Caregivers.pdf3) Free resource from the PH Association.
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Social media is a helpful way to spread PH awareness. If you read an article that hits home to you, share it.
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4) When you have time scroll through the PH columns. I’m sure you will find many relatable articles.
Colleen Steele – https://pulmonaryhypertensionnews.com/category/life-as-a-caregiver-a-column-by-colleen-steele/
Jen Cueva – https://pulmonaryhypertensionnews.com/category/worth-the-phight-a-column-by-jen-cueva/
Brittany Foster – https://pulmonaryhypertensionnews.com/category/recharged-and-rewired-by-brittany-foster/
Ellie Bird – https://pulmonaryhypertensionnews.com/category/chronically-uncool-a-column-by-ellie-bird/
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April 14, 2021 at 9:17 am #29733
Jen Cueva
KeymasterThank you, @colleensteele, for finally doing this. I have had this on my agenda for some time but keep forgetting. But, I love that you also included the PH columns. I think that we all can learn from each other. Well done, this was such helpful information for all newly diagnosed and for those of us who need reminders too.
@cherylh, this information may be helpful for you, too, being newly diagnosed.
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