Hello and welcome to the Fairfax Cryobank Family Forum!
The forum has a new look and the Fairfax Team is so excited to create the best experience for our users.
To Note:
Private Donor Groups and Private Sibling Connection Groups are now located under the category "Groups". Search the donor number in the search box and you should find exactly what you're looking for!
Questions about your forum access? Email forum@fairfaxcryobank.com
Follow these steps to join a private donor group:
1) Press "Join" at the right of the group
2) Once prompted to confirm your request please list this information so we can verify your information:
Name (under which the vial was purchased)
Email
Clinic Name
Donor number
Child Date of Birth
*If you are looking to start a private group for a PRS donor please email forum@fairfaxcryobank.com with the above information and that you are looking for a PRS group*
If you have any questions about the verification process please email forum@fairfaxcryobank.com
The forum has a new look and the Fairfax Team is so excited to create the best experience for our users.
To Note:
Private Donor Groups and Private Sibling Connection Groups are now located under the category "Groups". Search the donor number in the search box and you should find exactly what you're looking for!
Questions about your forum access? Email forum@fairfaxcryobank.com
Follow these steps to join a private donor group:
1) Press "Join" at the right of the group
2) Once prompted to confirm your request please list this information so we can verify your information:
Name (under which the vial was purchased)
Clinic Name
Donor number
Child Date of Birth
*If you are looking to start a private group for a PRS donor please email forum@fairfaxcryobank.com with the above information and that you are looking for a PRS group*
If you have any questions about the verification process please email forum@fairfaxcryobank.com
Medical Update- CLI Donor 0782
CLI Moderator
Senior Member
Medical Updates provided by CLI offer the added advantage that they are verified. We can confirm client information, review donor records and provide you accurate information right from the source. Please contact us if there is a medical update you would need to share. Donors can always update their medical history with us and we will share that information with you when it becomes available.
Donor 0782 had informed us in a recent medical update that he has been diagnosed with Antiphospholipid Syndrome (APS).
What is antiphospholipid syndrome (APS)?
Antiphospholipid syndrome (APS), also known as antiphospholipid antibody syndrome and sometimes Hughes syndrome, is a disorder characterized by elevated levels of multiple different antibodies (proteins produced by the body to fight off foreign substances) that are associated with both arterial and venous thrombosis (clots in the arteries and veins). If thrombosis occurs in an individual with APS, this usually happens between the ages of 35-45 years. After age 60, signs and symptoms of are APS rarely seen for the first time.
Is APS inherited?
Although APS has been reported to occur in multiple members of the same family, no clear inheritance pattern has been identified and no gene has been found to be the sole cause of this condition. One report in 1999 studied families with more than one affected member, examined possible modes of inheritance, and examined links with certain genes. In seven families, 30 out of 101 family members met diagnostic criteria for the syndrome. The data were fitted best by either a dominant (one copy of the altered gene inherited from one parent causes the condition) or codominant (features related to the condition from both parents are observed) model. It is therefore difficult to estimate the risk for the children from this donor, but the risks may be as high as 50%.
How is APS diagnosed?
A diagnosis of APS is made based on both clinical and laboratory findings. APS is diagnosed if an individual experiences one or more episodes of thrombosis or pregnancy loss and if aPL antibodies are detected through laboratory testing of the individual's blood.
There are two main types of antiphospholipid antibody tests - immunological tests, like the anticardiolipin ELISA (enzyme-linked immunoassay), and coagulation-based tests for the lupus anticoagulant.To diagnose APS, it is standard practice for both tests to be performed. The tests are then repeated six to eight weeks later to confirm the presence of aPL antibodies.
For more about the tests used to diagnose APS, go to the APS Foundation of America, Inc. [apsfa.org]
Treatment for APS must be individualized according to the person's current health status and the types of problems that person has experienced due to their APS. For those individuals who have been found to have aPL antibodies but have not had any signs or symptoms of APS, low-dose aspirin is generally recommended by their doctors. Research suggests that aPL antibodies may be found in around 1 to 5 percent of the healthy general population.
As a result of this finding Donor 0782 specimens have been restricted from sale to the general public. Any future use of donor 0782’s specimens will require a signed and notarized informed consent (available from CLI).
If you have stored semen samples on site with your doctor’s facility or at CLI you are entitled to a full refund for the cost paid per dose. Only unused semen specimens will qualify for a refund. Any incurred shipping or storage costs will not be refunded. If the specimens are stored at your doctor’s office and you do not want to keep the specimens for future use and desire a refund, you must authorize destruction at your doctor’s facility and that facility must send us a letter indicating that they have complied with that request. Only after receiving that letter from the offsite storage facility with your name, donor #, vial ID numbers including the total number of units destroyed will the refund be generated.
You may keep your specimens and use them in the future if you wish. Prior to using any units, or transferring any embryos created from donor #, we will require that you sign an informed consent that confirms you understand the circumstances with this donor’s medical update. A copy of that informed consent is available by contacting CLI. Once signed you would no longer qualify for a full refund on unused specimens. In that case, you could request a 50% refund on only those units stored at CLI.
CLI has a full time certified genetic counselor, Suzanne Seitz, MS, available to you to answer your questions. In addition our staff is available to help process refunds and exchanges as necessary. Please call us at 1-800-466-2796 for more information.
Donor 0782 had informed us in a recent medical update that he has been diagnosed with Antiphospholipid Syndrome (APS).
What is antiphospholipid syndrome (APS)?
Antiphospholipid syndrome (APS), also known as antiphospholipid antibody syndrome and sometimes Hughes syndrome, is a disorder characterized by elevated levels of multiple different antibodies (proteins produced by the body to fight off foreign substances) that are associated with both arterial and venous thrombosis (clots in the arteries and veins). If thrombosis occurs in an individual with APS, this usually happens between the ages of 35-45 years. After age 60, signs and symptoms of are APS rarely seen for the first time.
Is APS inherited?
Although APS has been reported to occur in multiple members of the same family, no clear inheritance pattern has been identified and no gene has been found to be the sole cause of this condition. One report in 1999 studied families with more than one affected member, examined possible modes of inheritance, and examined links with certain genes. In seven families, 30 out of 101 family members met diagnostic criteria for the syndrome. The data were fitted best by either a dominant (one copy of the altered gene inherited from one parent causes the condition) or codominant (features related to the condition from both parents are observed) model. It is therefore difficult to estimate the risk for the children from this donor, but the risks may be as high as 50%.
How is APS diagnosed?
A diagnosis of APS is made based on both clinical and laboratory findings. APS is diagnosed if an individual experiences one or more episodes of thrombosis or pregnancy loss and if aPL antibodies are detected through laboratory testing of the individual's blood.
There are two main types of antiphospholipid antibody tests - immunological tests, like the anticardiolipin ELISA (enzyme-linked immunoassay), and coagulation-based tests for the lupus anticoagulant.To diagnose APS, it is standard practice for both tests to be performed. The tests are then repeated six to eight weeks later to confirm the presence of aPL antibodies.
For more about the tests used to diagnose APS, go to the APS Foundation of America, Inc. [apsfa.org]
Treatment for APS must be individualized according to the person's current health status and the types of problems that person has experienced due to their APS. For those individuals who have been found to have aPL antibodies but have not had any signs or symptoms of APS, low-dose aspirin is generally recommended by their doctors. Research suggests that aPL antibodies may be found in around 1 to 5 percent of the healthy general population.
As a result of this finding Donor 0782 specimens have been restricted from sale to the general public. Any future use of donor 0782’s specimens will require a signed and notarized informed consent (available from CLI).
If you have stored semen samples on site with your doctor’s facility or at CLI you are entitled to a full refund for the cost paid per dose. Only unused semen specimens will qualify for a refund. Any incurred shipping or storage costs will not be refunded. If the specimens are stored at your doctor’s office and you do not want to keep the specimens for future use and desire a refund, you must authorize destruction at your doctor’s facility and that facility must send us a letter indicating that they have complied with that request. Only after receiving that letter from the offsite storage facility with your name, donor #, vial ID numbers including the total number of units destroyed will the refund be generated.
You may keep your specimens and use them in the future if you wish. Prior to using any units, or transferring any embryos created from donor #, we will require that you sign an informed consent that confirms you understand the circumstances with this donor’s medical update. A copy of that informed consent is available by contacting CLI. Once signed you would no longer qualify for a full refund on unused specimens. In that case, you could request a 50% refund on only those units stored at CLI.
CLI has a full time certified genetic counselor, Suzanne Seitz, MS, available to you to answer your questions. In addition our staff is available to help process refunds and exchanges as necessary. Please call us at 1-800-466-2796 for more information.