by April Gaede
Cystic fibrosis is a genetic disease affecting about 30,000 children and adults in the United States. A person with CF experiences respiratory and digestive problems; intellect and physical appearance are not affected. Victims can live into their 30s and 40s, but usually die in their teens, and almost always have shortened lifespans.
How many of you are like myself and have heard of the disease cystic fibrosis but never thought much about it? I didnít, until a few weeks ago, and then everything changed. Now I think that every White person who plans to have children should be aware of the disease. Let me explain why.
I am almost 6 months pregnant, and being a White Nationalist that believes in eugenics, I stated early on to my obstetrician that I was interested in genetic counseling. I took the Alpha Fetal Protein (AFP) test and had the results come back normal. The AFP tests for abnormalities that may include Down's syndrome, spina bifida, or other genetic disorders. While I was in the office of the genetic counselor, she mentioned that since I was White, would I be interested in doing another test for cystic fibrosis carrier status? I agreed, deciding that all knowledge is good knowledge. Since there has never been anyone in my family with any disease like that, I was not too concerned.
I did a little research and found that cystic fibrosis is most common among Whites of European descent. In fact, we are four times as likely as Asians to get the disease, and three times as likely as Blacks.
Every person has two copies of a gene, one inherited from each parent. The gene for cystic fibrosis is recessive, so it takes a copy from both parents to have it manifest itself in the offspring. If a person is a carrier--i.e., has one CF gene and one normal gene--that person is only a carrier. Having one copy of the gene is not enough to cause the disease, therefore a CF carrier does not have any symptoms. More than 10 million Americans are CF carriers. If they have a child with someone who isnít a carrier (the other 97% of the population), their child may also be a carrier but will have zero chance of developing cystic fibrosis. If both partners are CF carriers there is a 25% chance of having a child with cystic fibrosis, a 50% chance of having a child who is a carrier, and a 25% chance of a child who is a non-carrier. (See here.)
Obviously, carriers of the cystic fibrosis gene should be aware of their carrier status and make definite choices with respect to mates in order to prevent having a child with another carrier.
But while genetic screening for Sickle Cell Anemia or Tay-Sachs is commonly done for Blacks and Jews, and especially encouraged in Ashkenazi Jewish communities, screening for cystic fibrosis in Whites has not been common until recently. In fact, even now it is only offered to pregnant women--which to my mind is a little too late.
In my case, I was shocked to find that I was one of those 1 in 25 Whites who is a carrier of the cystic fibrosis gene. Remember--no one in my family had even heard of the disease before, let alone had it, and I have two perfectly healthy young girls.
Now my husband is also being tested, so that we will know what we are dealing with. Keep in mind that even if he is a carrier, we still have a 75% chance of having a healthy baby. We will not terminate the pregnancy at this late date, regardless of the results, but we want to know. Also, in future pregnancies I might choose to terminate early on if a child is going to be born with cystic fibrosis.
We received the news from the genetic counselor today that my husband is not a carrier. As you can imagine, we were relieved and happy to hear this. Now, at most, our baby daughter will have only a 50% possibility of being a carrier, like myself, and will manifest no signs of the disease.
I asked the genetic counselor if we could test my 11-year-old daughters Lynx and Lamb to see if they are carriers, but she said the test is not offered until pregnancy or planned pregnancy.
I disagree with this, since once two people are emotionally attached and married and/or planning to have a child, it is a bit too late. I believe all Whites who are interested in eugenics should know whether they are CF carriers like myself, and choose their partners accordingly.
My husband Mark and I spent 4 months as friends, hanging out, conversing and e-mailing, before we started our romantic relationship, and would have remained just friends had we known we were both CF carriers.
Happily, we are not!
I plan to continue to pursue having my daughters tested so that they will know in advance if this is something they should take into consideration when choosing a husband.
Lastly, if a couple has already had healthy children without cystic fibrosis, it does not mean that they cannot both be carriers. They might simply have been lucky and beaten the odds, which are 3-1 in favor of a healthy child.
So, again, I urge everyone, especially young women planning on having children, to receive genetic counseling. Your insurance will probably cover it, but even if it doesn't, it is simply too important to leave to chance.
Cystic fibrosis carrier testing gains support, USA Today, April 2, 2001.
Statement of the American Society of Human Genetics on Cystic Fibrosis Carrier Screening