Given increasing evidence of a genetic component to some cerebral palsy cases would you test?

lingo7728
lingo7728 Online Community Member Posts: 28 Connected
edited May 14 in Cerebral Palsy Network

https://www.medicine.net/news/Pediatrics/Study-supports-genetic-testing-for-people-with-cerebral-palsy.html

Given increasing evidence of a genetic component to some cerebral palsy cases would you test? 1 vote

Yes
0%
No
100%
Richard_Scope 1 vote
Why would I?
0%

Comments

  • chiarieds
    chiarieds Online Community Member Posts: 16,847 Championing
    edited May 14

    I don't have CP, but do have a genetic disorder, i.e. the hypermobile type of Ehlers-Danlos Syndrome (hEDS). There are different types of Ehlers-Danlos Syndrome (EDS) & genetic testing can help some with the rarer types; unfortunately, tho hEDS is by far the commonest, the gene(s) haven't as yet been found for this.

    This is a round about way in saying that yes, genetic testing may help some with CP, but how many, & would it change you/your treatment etc.? If you wanted to have a family, then if the gene(s) for your type of CP were known, then yes, I'd think you'd hope for appropriate testing if these genes were found to be transmitted from parent to child, & in what manner of inheritance.

    hEDS is transmitted in an autosomal dominant way, so with every pregnancy there's a 50% chance of having an affected child. Probably good that I didn't know what my disorder was at the time, as all 3 of my children were affected (& then it looks like all 3 of my grandchildren). So the odds didn't work out well in either mine or my daughter's favour!

    I don't think it can be easy knowing about your genetic makeup sometimes.

    I'd be intrigued if the genes for hEDS were found in the future, but, as I've secured (I hope) diagnoses for my children & grandchildren (the youngest of whom is the last awaiting a diagnosis), I think that would be it; mere curiousity, tho wanting to pass on to my grandchildren the knowledge of any specific gene(s).

    So often many genes are thought to be implicated in some disorders that practically there might not be the resources to find out more. I think CP is a bit like hEDS in that regard, tho EDS is always a genetic disorder, which isn't the case with CP.