A DSR member has an important message for all families that have used CLI donor 1368:
To the parents of offspring from Donor 1368:
Donor 1368 has is a carrier of alpha 1 antitrypsin deficiency. This is a condition, not a disease and can be managed, but it needs to be identified so that it is not misdiagnosed or mistreated. Donor 1368 is Phenotype Pi-MZ, which means that he has one normal gene (M) and one deficient gene (Z), either of which has an equal chance of being passed to his offspring.
For information, go to http://www.alpha-1foundation.org/. In order to get tested for free (and w/o health ins. knowing) you can participate in a research project at the University of South Carolina . Go to the website, www.alphaoneregistry.org, email alphaone@musc.edu or call toll free, 1-877-886-2383. They will send you free test kits with instructions.
It is very important that all offspring from Donor 1368 are tested for the presence of this genetic condition as healthy life style choices are imperative for alpha 1 carriers. I am the mother of three offspring from Donor 1368 and I am also an alpha 1 carrier. I am an MZ, like the donor. All three of me children received the donor’s Z and mine, making them Pi-ZZ. Despite this, they are doing well.
I would be happy to answer any questions you have for me; I can be contacted through Wendy at the DSR.