Neonatal Lupus Research Registry

• by slarnerd
• 2008-10-07 01:10:04
• General Posting
• 1721 views
• 0 comments

Most moms who give birth to a child with complete heart block have unknown autoantibodies called SSA/SSB. This affliction is called neonatal lupus and the symptoms are heart or AV block or a lupus rash on the baby. Once you have a baby with CHB or rash, you have an increased risk of having another affected baby. There is a registry in NY that conducts amazing research on the issue and is currently doing a clinical trial using IVIG to prevent the heart block in subsequent pregnancies.

If you are a mom with antibodies, an affected child or adult (born with heart block), or other immediate family member - your genetic information is needed by the registry to help others and yourself! They will test your blood or saliva for free to see if you carry the antibodies, as well as that of your family.

If you are pregnant or thinking of becoming pregnant and you already have at least one child with heart block, you may be eligible to participate in the study and receive free treatments to prevent heart block in your future child. So far, the study is looking very promising.

For more information - http://www.neonatallupus.com/index.html
or contact Carolina Llanos cllanosm@yahoo.com

I am so excited about their research and work. I hope others will support them and benefit.

Sterling