Why I started in the first place…
Genealogy isn’t generally a hobby of people aged below 70 (no offence). And I’m 36 at this time. Why did I start?
The reason is a medical one. My son was diagnosed with Cystic Fibrosis in 2006 and I wanted to know where the heck that came from. I now know that genealogy wasn’t going to answer that question, but once I was hooked, it didn’t go away…
Cystic Fibrosis is a hereditary disease that only occurs when both parents pass the recessive faulty gene to the child. This disease is most common in caucasian people. one in thirty are carriers. Other races have a much lower incidence of this genetic defect. In a sense, this means that historically the desease must have come into existence after the separation of races…
If one in thirty is a carrier, one in 900 couples are both carriers. one in four of their children will statistically have this disease with half of them being carriers themselves. This means that an average of one in 3600 babies born from Caucasian parents will have CF. In the Netherlands that’s about 55 children yearly.
What does genealogy have to do with this? Well, I needed a way to cope with this diagnosis and searching where it came from helped me deal with it. I was hoping to find higher than average child mortality in families in specific branches of the familytree. And though I have found a number of indications, there’s no way to prove anything. Also the statistics simply fail. Let’s look at that.
If a CF defect exists in a line of the tree, only one in thirty marriages within that tree will have a one in four chance of having a CF-kid. this means that chances to find these kids are slim to say the least. Then there is the simple problem of finding all that information. You’ld need complete families, all the kids, you need the dates. that’s difficult in it’s own right. And with a one in four chance, there might be no CF children or many more than expected…
As little as 60 years ago a child wouldn’t live more than a year so the death would be indicative. However, children could die from polio, dysentherie, cholera, plague and a score of other diseases. Then there are the natural disasters and famines. One needs to correct for these factors that will increase child mortality as well…
I haven’t found a way to analyze all data in the gedcom I created in the meantime that would actually give me pointers to possible families with CF-occurence. In fact, this is really difficult to do. Any pointers you may have are valuable to me!
In the mean time I found out that genealogy research is in fact a nice hobby, very interesting to do and enjoyable in it’s own right. I like to find out what my ancestors were doing and why I am who I am. I like the stories and some of those end up posted here. I hope you’ll enjoy these stories and comment on them.
Please support the Dutch Cystic Fibrosis Foundation http://www.ncfs.nl
Cheers
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In: Uncategorized · Tagged with: Conditions and Diseases, Cystic fibrosis, Genetic disorder
