A DAY FOR HEARTS : Congenital Heart Defects Awareness Day
Dateline: 02/14/2000
please see: http://heartdisease.about.com/blchd.htm
Today, February 14th, 2000, is A DAY FOR HEARTS : Congenital Heart Defects (CHD) Awareness Day.
A massive public awareness campaign will be kicked off across the world. The message -
Congenital Heart Defects (CHD) are a major healthcare problem.
And yet how many citizens know about this deadly condition, this Cinderella in the Heart Disease family ? Today, many more will.
Many State Governors, Presidents, Prime Ministers and National Parliaments in different countries will issue proclamations to the effect that Feb.14th every year will be recognized as "A DAY FOR HEARTS : Congenital Heart Defects (CHD) Day!"
Every flame needs a spark. Jeanne Imperati sparked off the "A Day for Hearts" fire. The Children's Health Information Network (C.H.I.N.), brain-child of another CHD parent, Ms.Mona Barmash, fuelled it with enthusiasm and community.
This event is the fruit of the tireless efforts of a dedicated group - a group that includes doctors, nurses, parents, adults with CHD's, families who have lost a loved one, aunts and uncles, grandparents, spouses, brothers, sisters and the wonderful people from C.H.I.N.'s online community of parents and physicians (some of them from your own hometown).
But what is Congenital Heart Disease (CHD) ?
CONGENITAL HEART DISEASE ..... a chilling phrase; a lethal constellation of birth defects of the heart that affect millions of newborn infants and children; a killer that claims thousands of lives every year.
A fortunate few CHD victims are cured by the miracles of modern day surgery. Sadly, the vast majority do not have access to treatment; they are forced to lead restricted lifestyles, painfully aware too that their continuing lack of productivity makes them a heavy burden on their families and communities.
CHD - A perspective
There are two main varieties of heart disease.
Acquired heart diseases are the consequence of indulgence, excesses, aging and infection. In the recent past, there has been an encouraging drop in its incidence, thanks to
- increasing knowledge and awareness of the underlying causes
- populations adopting more healthy practices and habits
On the other hand, Congenital heart disease (CHD) is a more or less random event. The causes that underlie it still remain un-deciphered. The incidence of cardiac birth defects has remained constant - at 7 to 8 cases for every 1000 live births - across time and continents.
CHD - A complex issue
Among heart diseases, CHD is unique for a number of reasons:
CHD IS A GROWING PROBLEM
CHD is not a problem that is going away. While other heart diseases are coming under control, the incidence of CHD remains unchanged. The pie (heart disease) is becoming smaller, but CHD is becoming a larger slice of it ! If current trends continue, 20 years from today CHD might become a serious fraction of our heart - and health care - burden.
CHD IS A NEGLECTED PROBLEM
In many countries, patients with CHD live and die untreated. Surgery for heart birth defects emerged as a specialty in its own right only in the early 1980's. Even today, surgery for CHD accounts for less than 5% of heart operations performed world-wide. Dedicated centers for treating CHD are few and far between.
CHD IS A COSTLY PROBLEM
Most complex birth defects of the heart require multiple procedures for cure. And parents of CHD victims are often young, just starting out in life. Financially insecure, emotionally strained to breaking point, these young families need support and guidance.
CHD IS A LONG TERM PROBLEM
A CHD patient, after treatment, can look forward to living 50 to 80 years more! The path ahead, however, is strewn with obstacles and uncertainties. Late complications; employment and insurance; marriage and children; all are areas of concern.
CHD IS A SILENT PROBLEM
High cholesterol, bypass surgery, angioplasty and gene therapy are the glamorous issues, the media superstars of heart disease. Most of the budget allocations of large organizations are diverted to adult heart disease research. Consequently, funding for research into CHD is scarce.
Neglected, unchallenged, indeed often undetected, CHD pervades communities, affecting the rich and poor alike, in developed as well as backward countries.
CHD - the burning issues today
Seeing CHD in all its persistent, relentlessly progressive horror, it is obvious that
- the causes of CHD need to be detected, and soon
- the problem needs to be highlighted, brought into the limelight
- medical facilities need to be made accessible to all patients
- CHD families need ongoing constant support
- treatment must be viewed as a long-term continuing process
The Solution
When one realizes how few resources are presently allocated to achieving these goals, it is apparent that the first steps are to:
- prepare a realistic plan that will assist in diagnosing and treating CHD, while harnessing the power of the Internet as an action-oriented health education and awareness tool
- create a small community-based inter-disciplinary team structure, and encourage interaction and co-operation among these teams, to develop a networked global CHD organization
Tricia Christenson, who has a child with CHD and is the founder of a CHD support group, Hearts for Hearts' Sake, says this about the need for enhancing public knowledge of CHD:
"Setting aside a day of remembrance and celebration of the great medical advances which keep our loved ones alive would honor the unseen battle that children and adults with CHD fight daily. The creation of a day of this kind would help to lift the barrier of ignorance, helping both the families and individuals who currently are affected by Childhood Onset Heart Disease, and those whose lives may be affected in the future."
A DAY FOR HEARTS : CHD Awareness Day is an effort to highlight to the public the problems posed by Congenital Heart Disease. This awareness, it is hoped, will lead to an increased demand for, and attention to
- research funding
- formation and assistance to support groups
- education of the general public
- enhanced standards of care to CHD patients worldwide
You too can help make a difference.
Tell your friends, family and others about CHD - spread awareness, raise your voice, support this initiative that will help make the future secure for kids around the world with Congenital Heart Defects.
please see: http://heartdisease.about.com/blchd.htm
For more resources on heart disease, you can
- visit the archives for related articles
- visit the resource library
- check out the heart disease bookstore
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