Links and News

New Cone Repair
conerepair There is just a handful of heart centers in the United States that performs the advanced and innovative cone procedure for repairing the tricuspid valve in children with Ebstein’s anomaly.

In this procedure, extra tissues on the enlarged right side of the heart are folded up, and the malformed valve is surgically reshaped into a cone. The cone-shaped valve opens to a central blood flow and closes with full coaptation (joining, reuniting) of the leaflets.

Tricuspid valve replacement: Sometimes a patient’s tricuspid valve is too malformed to be repaired. In this case, the existing valve will need to be replaced with a mechanical valve or a bioprosthetic one made of human

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Searches related to Ebstein’s Anomaly
ebstein’s anomaly life expectancy
ebstein’s anomaly fetus
ebstein’s anomaly treatment
ebstein’s anomaly prognosis
ebstein’s anomaly symptoms
ebstein’s anomaly surgery
ebstein’s anomaly repair
ebstein’s anomaly prevalence

Support Groups

Ebstein’s Anomaly Support Group for Adults
http://health.groups.yahoo.com/group/EbsteinsAnomaly_Adults/

Congenital Heart Defect Forum
www.ebsteins.org

Heart Hobbies – UK
http://hearthobbies.weebly.com/

The Adult Congenital Heart Association (ACHA)
http://www.achaheart.org/

Ebsteins Anomaly Resources

http://www.bandbacktogether.com/ebsteins-anomaly-resources/

Canadian Adult Congenital Heart Network
http://www.cachnet.org/index.cgi

Canadian Congenital Heart Alliance
http://cchaforlife.org/

Grown Up Congenital Heart Patients Association
http://www.guch.org.uk/

The Canadian Congenital Heart Alliance (CCHA)
http://www.cchaforlife.org/

International Society for Adult Congenital Heart Disease (ISACHD)
http://www.isachd.org/

National Cancer Institute
http://www.cancer.gov/cancertopics/tobacco/smoking/

 

HOW TO APPLY FOR DISABILITY BENEFITS

https://www.ssa.gov/disability/disability_starter_kits_adult_eng.htm

Adult disability starter kit.

https://www.ssa.gov/disability/disability_starter_kits_child_eng.htm

SSA’s childhood disability starter kit.  (under age 18).

http://www.disability-benefits-help.org/forum

Can help answer any questions anyone with Ebstein’s has if they wish to apply.

https://www.ssa.gov/ssi/text-child-ussi.htm

Discusses income limitations for children who are applying.