By admin on October 20, 2009

From Today’s Journal of the American Medical Association:

“Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation” JAMA, 10/21/09, Vol. 302, Number 15, p. 1681-1704, including commentary

A donor who had no knowledge of of underlying heart disease, donated to a sperm bank over a 2 year period from 1990 to 1991. In 1995 he was diagnosed with HCM (a disease of the muscle of the heart in which a portion of the myocardium is hypertrophied (thickened) without any obvious cause. It is perhaps most famous as a leading cause of sudden cardiac death in young athletes. The occurrence of hypertrophic cardiomyopathy is a significant cause of sudden unexpected cardiac death in any age group and as a cause of disabling cardiac symptoms. – Wikipedia)  Nine of his twenty four (twenty two donor kids, two with his wife) children have been identified as having HCM (eight of the donor children and one of those produced with his wife).

One child died at age two due to heart failure, two others have extreme left ventricular hypertrophy at age 15 years and are judged to be likely to be at an increased risk for sudden death.

From the article:

“While the US Food and Drug Administration (FDA) inspects the operation of the banks and screening procedures for donors, this process has been directed primarily toward the prevention of infectious diseases, with little attention to the potential transmission of genetic diseases.”

“This case underscores the potential risk for transmission of inherited cardiovascular diseases through voluntary sperm donation, a problem largely unappreciated by the medical community and agencies regulating tissue donation.”  The article goes on to say, “We are aware of only one other documented instance in which a genetic disease was transmitted to an offspring by sperm donation”.

These are some of the medical and genetic issues that have been reported on the DSR:  Ectodermal Dysplasia, Autism, Aspergers, Von Wilberands (blood disease), MCAD (genetic disorder requiring both parents to be carriers), Type I Diabetes, Albinism, heart murmur, hypertrophic cardiomyopathy, Marfan’s Syndrome, PHACES Syndrome,  Dwane Syndrome, Kiddney Disease,  Hemoglobin D, Metabolic Genetic Disorder, Complex Congenital Heart Defect, Tourettes, Hypophosphatasia, Williams Syndrome, Mitral Valve Stenosis, CHD, VUR, PKU, Tay Sacks, Atrial Septal Defect,  HLH, Hypospadias, Karatosis Pilaris, Ebsteins Anolomy, ASD, Van Der Woude Syndrome, Seizure Disorder, Horseshoe Kidney, Imperforated Anus, Hole in Heart, Cyctic Fibrosis, Spinal Muscular Atrophy, Amniotic Band Syndrome, Polycystic Kidney Disease, Congenital Heart Disease, Hydrocephalus, Zellweger Syndrome, Leukemia, Renal Disease, Severe Congenital Neutropenia, JDM, and Bi-Polar Disease.


By admin on October 12, 2009

Hello!

We have assembled the following survey intended for donor conceived youth and adults who have one or more LGBTQ identified parents. Over the years the Donor Sibling Registry has gathered information from a myriad of families, but we believe predominantly more heterosexual. We think the issues for LGBTQ families are both similar and quite different. The results of this survey will be used to both better understand and to begin to construct resources that are designed to meet the needs of our families. Our goal is to provide an accurate reflection of experiences and to assist families in having meaningful dialogue related to the challenges specific to our community.

Please note that this survey tool was designed by members of the DSR who are also identified as LGBTQ. Two are licensed therapists.

A NOTE TO PARENTS: This survey is designed for mature school aged youth and above. Please review the questions to make sure that they are age appropriate for your child. Some of the questions deal with potentially difficult topics for families. Again, our goal is to understand our children’s experiences so that we can design and provide better resources for families as we go forward.

If you only have one parent, please answer questions for Parent B (bio parent).

PLEASE NOTE: Many questions will allow more than one answer.

We appreciate your time (should take no more than 15 minutes). Thank you!

The Donor Sibling Registry

The Survey:

http://www.surveymonkey.com/s.aspx?sm=RX_2fluti77pCoF1yS3HQybA_3d_3d


By admin on October 12, 2009

Please pass along- you do not have to be a DSR member to participate.

http://www.surveymonkey.com/s.aspx?sm=yxS6EHgz_2fBei8YHhY69e9Q_3d_3d

We have assembled the following survey intended for donor conceived youth and adults who are children in both single mom and mom/dad families. Our goal is to provide an accurate reflection of experiences and to assist families in having meaningful dialogue related to the challenges specific to our “donor” community.

A NOTE TO PARENTS: This survey is designed for mature school aged youth and above. Please review the questions to make sure that they are age appropriate for your child. Again, our goal is to understand our children’s experiences so that we can design and provide better resources for families as we go forward.