With a disease like Canavan Disease, awareness is so important when it comes to the group that is at the highest risk. This is a disease that involves little babies and it is one for which there is no cure. That is why it is vital to ensure that there is enough of education so that the target group takes informed decisions rather than get into pregnancy blindly.
The Canavan Foundation was set up by parents and families of babies and children who had succumbed to the Canavan disease. The main aim is to educate and spread awareness among the group of Jews that is susceptible to the disease. Considering that 90% of Jews in the US fall into this category, the issue assumes even greater importance.
While the disease might just strike one in around ten thousand, one in forty in this group are carriers. All it takes is two carriers to come together and the chances of having a Canavan baby are 1 in 4 – that’s an overwhelming 25%. This is the reason that counseling should take place before a baby is conceived.
The counseling could be at various levels and stages. One, to educate people about the disease and the odds of having a baby that could develop Canavan. Two, where to get tested for being a Canavan carrier. Three, the options if both are carriers. Four, what to do if the risks are high and the couple is expecting a baby.
The first kind of counseling is broad based and the whole risk group is the target group. The danger of having this altered gene has to be spread in no uncertain terms. The Foundation as well as support groups target places where there are congregations of Jews like religious places, community centers, etc.
Online forums also help in bringing out worries and doubts and in clarifying things that people do not understand. Counseling for the second follows from here. After educating, people need to be told where to go to find out their position when it comes to Canavan disease.
Could they unknowingly be carriers? The third area of counseling is more on a one on one with the couple and this precludes that the couple has tested positive for being carriers. The counseling at this stage will have to be more understanding as the options here are really just two: opt for artificial insemination or adopt.
This might go against the religious beliefs of people so it should be handled with delicacy. However, the horrors of taking a chance should be communicated as gently but as firmly as possible. The fourth area of counseling is when the couple is already expecting a baby. This could be heartbreaking to do for the parents but with the risks so high, it is imperative.
The amniocentesis test is done here to determine whether or not the baby has the disease. This could be traumatic for the parents to be if it tests positive and they have to terminate the pregnancy. This stage would involve a lot of counseling.
Counseling before birth is really the only way in a disease like Canavan which has no cure as yet. There are tough decisions to be made if this disease is on the horizon and counseling is necessary to help them through it and to make the right decision.