Awareness. Empowerment. Hope. Together we can make a difference.
Hello my name is Dr. Katherine Y. Brown. If I can take a few moments of your time, I’d like to share a little bit of my PH story.
Although I was a healthcare provider, my family wasn’t aware of PH until it knocked at my mother’s door. The Roberta Baines Wheeler Pulmonary Hypertension Awareness Day Conference was our way of contributing to the PH community by providing a free day of education, resources, and HOPE for patients, healthcare providers, caregivers, and the community. The day isn’t about one person but rather a quiet suffering community seeking a better way of life and coming together to make a difference.
I can recall walking into the hospital unit when my mother was in a coma, feeling alone, so I began talking to other family members. when you’re an only child you don’t meet strangers. I listened to everything they shared and took notes of their concerns.
There were common themes :
– Fear of PH: They had not heard of PH.
– Feeling Overwhelmed: Families didn’t fully understand the severity of their loved ones illness. They did not understand the amount of depression that their loved one expressed feeling from being unable to participate in activities they once enjoyed.
– Feeling Frustration: Whether they were being misdiagnosed or actually had resources available, the stress of the situation seemed to make it all a bit unmanageable. In some cases the biggest issue was the funding for the necessary procedures and external help.
– The List goes on.
As I listened to their stories and we began talking and sharing, we were creating our own form of community healing. We were not alone. Day by day we would check on each other and provide comfort knowing that during these tough times we were not alone. At that time, I was told that my mother may not survive and many of my new PH friends encouraged me to put forth my ideas of an awareness day into a yearly event in my mother’s honor so that others dealing with the trials of PH would have access to the necessary resources in a fun,safe, and supportive setting. I gave them my word that I would.
Thankfully, my mother was discharged from the hospital, but life took over. I was always afraid that I did not have outside support or skill to bring my dream to life, but after attending a support group meeting I met an amazing nurse named Kimberly who heard my vision and simply said, “LET’S DO IT!”. Many other community leaders loved the idea and together we made it a reality.
The first annual Roberta Baines Wheeler Pulmonary Hypertension Awareness Day was held on the campus of Vanderbilt in 2013. In 2014, we had over 100 people come for more hope and empowerment. 2015 and 2016 were very successful and we believe that 2017 will be our biggest RBW PH Awareness Day yet.
People need to know what pulmonary Hypertension is. That’s why we need your support to keep the Roberta Baines Wheeler Pulmonary Hypertension Day going to bring hope to a community of individuals and families who have bright futures and lives to live. Together WE make a difference. Everything that we do in the community is FREE. We are Volunteers! We are patients. We are caregivers. We are the community. We are YOU!