WHAT IS CHD?
CHD stands for Congenital Heart Defect or Disease
Congenital means born with
CHD has nothing to do with clogged arteries or acquired heart disease.
We were born with hearts that have valves, ventricles, arteries, etc that formed really weird, if at all.
Each malformation is an individual heart defect.
Some of us have one defect, some of us have multiple.
Defects range in severity.
With more severe combinations, many refer to it as Congenital Heart Disease.
We have multiple heart surgeries throughout our lives.
Those living with single ventricle hearts are now living into adulthood for the first time, and the life expectancy still in 2021 remains unknown.
THERE IS NO CURE...YET...
FOR THOSE WHO SURVIVE INTO TEEN AND ADULTHOOD, many terrifying struggles come.
The heart surgeries we had as children to keep us alive, for an unknown amount of years,
begin to get old and therefore, wear, tear, and put us back into heart failure.
This is when we require new valves, pacemakers, and more.
Many of us live in heart failure for years as we wait on a transplant list for hearts, livers, and lungs.
This comes with devastating struggles, and often takes a toll on mental health.
It was way past time to be heard...
Voices of CHD
is a Blog that was created to give a voice to CHD Adults, to provide a platform for mental health education, inspiration, and healing through Adult CHD Survivor's stories who pave the way for the CHD Community.
Our stories help:
CHD adults, teens, children, parents, loved ones, the CHD medical community, and the public
learn the reality of what CHD patients go through.
For the first time in history, Complex CHD patients are living into adulthood.
As cool as that sounds...this leaves CHD Adults in uncharted territories, with no answers. As a result we are guinea pigs for experimental surgeries, tests, medications, and more - with our mental health being completely ignored...until now.
FOUNDER, STEPHANIE ROMER: After years of her own research interviewing hundreds of CHD Adults and discovering there is no outlet or organization that existed to talk about Taboo Subjects such as mental health affects of CHD; HLHS Survivor Founded CHD Legacy Publishing, LLC. As a result of Stephanie Romer's relentless public Advocacy work, blog, website, YouTube Videos, and speaking at countless conferences, many CHD organizations and other Advocates began speaking out about Mental Health and Neurological issues that come along with CHD over the past few years. She is now a published Author of her Memoir - QUIETING THE CLOCK: MEMOIR OF GIRL FACING DEATH AND CHASING FREEDOM.
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If CHD Legacy has provided education, inspiration, or healing
to you or your family,
show your support by sending a donation!
Thank You for your contribution!
Your donations help pay for our website, hosting fees, time and labor. That includes, but is not limited to, long hours of research, meetings, interviews, and writing,
to keep life changing, and motivating content alive and pumping.
Thank you for supporting our mission in providing mental health education.
Teaching the raw reality of living with CHD saves lives!
The authenticity and courage of each writer now makes us one story stronger.
This reminds us we are not alone.
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CHD Legacy Publishing features it's first book:
QUIETING THE CLOCK: MEMOIR OF A GIRL FACING DEATH AND CHASING FREEDOM
CHD Legacy began as blog publishing - featuring Adult Congenital Heart Disease Patients who are surviving into their 20's, 30's and 40's for the first time in history.
This website and interactive forum (now unavailable) was the groundwork for a CHD Empire of Resources I blogged about and began to create, 10 years ago. It has since been created as a centralized location for CHD Adults and other people struggling with a disability to feel they weren't alone. One of my goals was to help loved ones and medical professionals understand us more. Yet, the most underlying goal in creating the CHD LEGACY Empire was to encourage others to JOIN ME in speaking out about the Mental Health aspects of living with an invisible disability or chronic illness, as well as the reality of the physical struggles we deal with every single day.
However, beginning in 2020, CHD Organizations began to take and copy my ideas, my website, and parts of my Advocacy instead of simply asking me to join forces with them where we can RISE UP TOGETHER and have a stronger network. I became very very ill suddenly toward the end of 2020, resulting in the entire year of 2021 in the hospital and constant procedures, tests and appointments. Now in 2022 some of those same organizations are doing literally verbatim what I spent YEARS building and spending every second of my energy of my life doing - helping CHD Patients. Again, instead of asking me to participate, they pretend everything was their own ideas even though I have been doing what they are now doing for YEARS.
For example: Speaking about Taboo subjects, one being Mental Health, has been a passion of mine since 2005, where I began Advocating under a different name due to the amount of shame I carried having this illness. I never want anyone to have to feel that way...so, I created a space for us to feel loved and understood.
I created a blog outside of my own experiences to feature the other Pioneers of CHD (and now other disabilities) called
Voices of CHD: The Elephant.
For those who are not comfortable with the word "disability" I UNDERTSTAND! However, please understand that it is to use one word everyone can understand to refer to a community of anyone who falls under the below description:
dis·abil·i·ty | \ ˌdis-ə-ˈbi-lə-tē
Definition of disability
1: a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions