PHAmerica Honors Essays

Jane Northrop

PHAmerica Pillars Ambassador

Representing those who are a caregiver/family member to a pulmonary hypertension patient.

"I don’t want any parent or patient to feel as alone and in the dark as Nicole and I did."

- Jane Northrop

"How would you help others in the PH community stay positive and hopeful while coping with the challenges of this disease?"

My daughter was diagnosed in January 2010 at the age of 15 with pulmonary hypertension (PH) caused by a congenital heart defect that wasn't previously diagnosed. I remember for many months after this I couldn't find any good information about PH. The information I did find was so scary that it left me little hope. In July 2010, I found the Pulmonary Hypertension Association and this changed my whole attitude. I had somewhere to go for education and support. I have always believed that knowledge is power. I know this has been the case with this disease.

I don't want any parent or patient to feel as alone and in the dark as Nicole and I did. I didn't have much hope the first few months of Nicole's diagnosis. Through the PHA support groups I found other parents, caregivers and patients that gave me hope for Nicole's future. I have seen much improvement since Nicole started taking Revatio, Letairis, and Tyvaso and I am grateful. I must believe that there's hope for a cure and Nicole will be healed.

Jane Northrop If there's one thing I can say to a parent, caregiver or PH community member is never give up hope and to stay positive. This will get you through a lot of difficult days.

I must remain positive for no other reason than for Nicole. I will always be her voice and her advocate no matter how old she is. I will be with her every step of the way on this journey holding her hand. Every day cherish the moments that you have and look for the good in them. I wish more people would realize this before they or a loved one are faced with a serious illness.

How would I help others? I guess the same way as I have been trying to do since Nicole's diagnosis. I can write an encouraging word to someone who is newly diagnosed, a parent who has a child in the hospital or maybe even a not so good report from the doctor. I can raise awareness about PH like I did in January when I spoke at a homeschool meeting about Nicole and her illness. I can and hope to become a peer mentor in June for Tyvaso so I can help others who are starting the medication.

Thank you for allowing me the privilege of entering this contest.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.