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I participated in PDGene test. Negative results were given me, indicating my PD is not genetically based but is environmental. Testing was done at home and I sent cheek-rubbed swabs directly. Results were sent back to me in a month. Your family will appreciate knowing if your PD is genetic or not!
I also requested a Syn-One test. Your doctor needs to obtain testing tools from CND Life Sciences; he takes 3 skin biopsies and sends them to CND Pathology. Results were sent to the doctor in… read more
I did the PD GENEration Mapping the future of Parkinson’s Disease study. It’s free. 🆓 Filled out form online, received the collection kit in the mail, swabbed my mouth with a Q-tip and mailed it back. They called me with the results about three weeks ago. My Parkinson’s is genetic, I have the Parkinson’s gene mutation GBA with variant V394L. It is autosomal dominant, which means I got it from 1 parent ,my dad has Parkinson’s disease. With this variant you usually develop Parkinson’s early, symptoms come on quicker and you have a higher chance of developing cognitive deficits… Yay me! You have a 50-50 chance of passing it on to your offspring, I got it but so far my brother does not. I have two children so 50-50 chance with them. It also requires a trigger to activate the Parkinson’s. The genetic gene counselor said anything can be a trigger from a sickness, fall, bump on the head to just about anything to set the Parkinson’s off, but also said many people do not develop Parkinson’s as well. Fingers crossed I did not pass on the gene to my children.
Thanks @A MyParkinsonsTeam Member !
Is it simple to say how you go about getting it done and what's involved Les ?
This is the link to the PD GENEration Mapping the future of Parkinson’s disease. The study is being done by Indiana University School of Medicine.
https://www.parkinson.org/advancing-research/ou...
It’s easy to do, answer a couple questions, submit it. A few days later someone called me from Indiana University explaining the genetic gene test and told me they would mail out a collection kit. You just swab your mouth with a Q-tip, send it back. A month later, they called me to set up a phone appointment with genetic gene counseler to go over the results, you also get a detailed copy mailed to you. Right now only taking people with Parkinson’s disease. Later in the study will take family without Parkinson’s.
How do you get the gene test? My husband and his brother both have PD, but could have gotten it from exposure to chemicals (i.e. Agent Orange) or TBI. Since both have children, I think getting tested for the genes could be useful.
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