My son has a genetic disorder...it does not have a name...how does a genetic disorder get a name...?

Such as down syndrome. How does a name get put to a genetic disorder? My son has chromosome 1p36 deletion syndrome and it would be nice if it had a name to where people could start understanding what it is.

The syndrome has been found since the early 1990's

Down syndrome was named for John Langdon Down, the first doctor to identify the syndrome. Having a name can be a mixed blessing really, people associate the name "Down" as a negative thing, those of us with children or loved ones feel the impact of that and have to fight hard against a lot of ignorance and just plain meanness to get people to see the positive things about our kids. Name or no name, getting people to understand the condition is a sometimes tough, but very rewarding job. You have to take it one person at a time. You might want to consider starting some form of on-line forum for people touched by the syndrome...there is power in numbers.

Good luck and try not to get discouraged. There are a lot of idiots out there who refuse to understand things like this, but there are more people out there willing to be educated.

Syndromes are usually named after the patient that it is first discovered in.

it must be something new and uncommon


ask a specialist for help

they usually name it after the first one they discover with it

This syndrome is not all that rare. I recognized it as soon as you mentioned it. Names on syndromes and diseases are the bane of the medical profession. Just think of having to remember all the features of a man's name x 2000.

Sometimes it is named after a person who had it, a doctor or a scientist that studied it, or it has roots in ancient Greek or Latin.

Through research by done by doctors and scientist.. basically until that know exactly waht causes it and why it happen... It will not be name.. when it is name they will name it after what it affects.. or if maybe after your son or by the doctor who discovered and did the research on it

Chromosome 1p36 deletion syndrome can also be called "monosomy 1p36". Monosomy 1p36 is considered to be one of the commonest chromosome deletion syndromes. The incidence of monosomy 1p36 has been estimated to be 1 in 5,000 to 1 in 10,000 liveborn children.

Syndromes are named for the doctor or scientist that first discovers it.