Home Page 1 WELCOME
Welcome to the Non Compaction Cardiomyopathy Association! The purpose of this site is to share information and to help connect patients (and families of patients) that have been diagnosed with
Non Compaction.
FEATURE STORY
Please be aware that this site is for informational
purposes only.
Any questions about actual treatment should be directed to your medical professional.
Meet Maria.....
Maria was diagnosed in 2007 with LVNC. She successfully underwent heart transplant in January, 2011. She currently moderates two support groups- one for young adult heart patients and one for women. Maria is the Go Red For Women spokesperson in Minnesota for 2011.
Check out our Press Page for Maria's story in her own words and links to her groups.
What Is NCC 
What's in a name...
Names associated with Non Compaction include:
Non Compaction Cardiomyopathy (NCC)
Left Ventricular Non Compaction (LVNC)
Isolated Ventricular Non Compaction (IVNC)
Spongiform Cardiomyopathy
Non Compaction is a rare condition. It is currently classified by the American Heart Association as a primary genetic cardiomyopathy. Many patients are specifically diagnosed with Left Ventricular Non Compaction (LVNC) however non compaction can affect other portions of the heart muscle. The affected heart muscle is thickened by deep trabeculations (or valleys). These trabeculations occur as the heart is forming in utero. Patients may be diagnosed at any stage of life from birth to later in adulthood.
Symptoms vary patient to patient but generally include shortness of breath, exercise intolerance, and reduced ejection fraction (EF). Patients with Non Compaction are considered to be at a greater risk for developing blood clots due to the blood retained in the trabeculations of the heart muscle. Recently doctors have placed various types of Non Compaction into subgroups. These subgroups include: Isolated LVNC, Isolated LVNC with Arrythmias, Dilated LVNC, Hypertrophic LVNC, Hypertrophic and Dilated LVNC,
Restrictvie LVNC. (1)
Current research studies have shown patients responding well to therapy with specific drugs such as certain ACE inhibitiors and BETA blockers, especially carvedilol. These drugs have been shown to help regenerate the heart muscle, reduce in size the thickened heart wall, and to improve ejection fraction. In some cases EF can be restored to normal levels (60% or better). Aspirin therapy (81 mg+/day) is typically recommended to help reduce the risk of blood clots. Some treatments do include actual blood thinning medications depending on the patient's individual condition. Patients with reduced heart function (EF of >35%) may receive implantation of an ICD (implantable cardioverter-defibrillator) to prevent sudden cardiac death. In some cases where the heart muscle is severely weakened a heart transplant may be necessary.
Non Compaction has typically been associated with a high mortality rate but that outlook is now considered outdated. With more advanced technology in echocardiogram and cardiac MRI, as well as a heightened awareness of this particular type of cardiomyopathy, more and more cases are being diagnosed early and correctly.
Press November, 2011
Recently Dr. Towbin of the Cincinnati Children's Hospital published a new article titled "LVNC- A New Form of Heart Failure". Dr. Towbin and his associates are regarded among the top researchers and clinicians treating LVNC. They have established the Cardiomyopathy and Advanced Heart Failure Clinic at Cincinnati Children's where they treat children and adults.
For more information please go to www.cincinnatichildrens.org/service/c/cardiomyopathy/clinic
LVNC_a_new_form_Heart_Failure.pdf
Meet Maria (continued from home page)
"I was born with a congenital heart defect which at the time was called hypertrophic cardiomyopathy. This meant that the walls of the heart were too thick and diseased. Growing up it rarely affected me until I got older. When I was 25/26 I started having terrible abdominal problems and got sick very often. After years of testing they finally figured out that it was my heart that was failing and fluid was building up in my body. I was put on medication and tried to be as careful with my health as possible. Dane and I got married we traveled as much as we could, however, symptoms and arrythmias slowly got worse. Ive had a pacemaker/ICD implanted and have had two ablations (where they burn the sites thought to cause the arrythmias) however it wasnt sucessful at stopping them. After returning from our trip to Costa Rica in Jan of 2011, I realized that my symptoms and condition was getting to the point where I needed to get a full evalution at the U of MN. After a few tests and full evalutation the doctors suggested that I start Cardio Rehab and go forward with heart transplant listing. After 100 days of waiting and going in and out of the hosptial and being hooked up to and IV pump at home, I got my call for a new heart on August 3 and my new heart was put in me beating on August 4th at 4:30am. I spent 8 days in the hospital recovering and by the 4th day I could walk up 4 stairs!!! I have had ups and downs since then with meds and different things but I am on a great path to recovery!!! Everyday I feel stronger. I am excited for the rest of my life and so thankful for my second chance at life!!" Maria Legatt
Girl's Heart Group Young Adults with Heart Disease Group Maria's Blog- ZipperLife
The Non Compaction Cardiomyopathy Association is currently in the process of filing for Not For Profit status.
At this time we cannot accept donations as an organization but if you would like to donate
The Children's Cardiomyopathy Foundation is a wonderful cause. www.childrenscardiomyopathy.org
"The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy,
a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment,
and quality of life for children affected by cardiomyopathy.
CCF actively works with federal agencies, medical societies, voluntary health organizations, and hospitals nationwide to increase awareness, accelerate research, and advance education on pediatric cardiomyopathy. The hope is that one day every affected child can be cured to live a full and active life."
"A Cause for Today A Cure for Tomorrow"
Community Page 1 Fun Fact:
The Non Compaction Cardiomyopathy Facebook support group has hundreds of members from all over the world!
NCC Assoc. has two Facebook locations.
- One public page for info and Association related info.
- One private page for patient conversations and support.
If you need any assistance or have questions about these pages, please contact noncompaction_gmail.com
The NCC Association also has a page on Facebook. It is a great place to share links and info. It also serves as a public page to raise awareness and share with others who want to show support but may not be interested in the conversations on the private page.
Our community support group page is located on Facebook. It is a private group and is meant to provide a place for patients, family, & friends to discuss & share info in a positive, secure environment. Your privacy is very important to us and contact info will never be collected.
Facebook www.facebook.com/noncompaction
