Questionable knowledge and felt like upselling
I contacted them to see about getting free sponsored genetic testing for a disorder; According to two non-profits I spoke with that advocate for this disorder, and putting everything I have (genetic ancestry, symptoms/medical history and prelim test results) in 3 different A.I. systems (one medically specialized) think it's possible that I could have this particular disorder. The GC I spoke with does not, thinks i don't have the criteria since it's very rare, about 1 in 15K; I have 1 in 2 MILLION cancer that no health provider thought of...so I can speak of rare things.
I told her I was putting off diagnostic tests such as endo/colonoscopy due to fear of reaction of anesthetic and fasting (which, if I did have the disorder, could potentially be life threatening; I already had rhabdo from iodine contrast). Her response was I should follow my doctor's orders.
Ultimately the GC recommends whole exome testing, and then tells me if I DO have this disorder that it will be found, that it's not an impossibility.
Looking over the summary I received, I remember that I was NOT asked about exercise intolerance (a symptom, which I mentioned in a family/medical history document I uploaded to my profile, which appears they never read, and since deleted!). I wasn't asked about a few things that I listed in my history, and they stated as negative reporting on my summary. Had I been asked about other symptoms that I had, that are indicative of this particular disorder, maybe I would have met the criteria.
IMHO, I feel like they are trying to sell me on the more expensive route. And I don't think my GC had experience beyond education, from what I could find. Supposedly things were reviewed by an "MD" (who, what specialty, if any, no signature sign-off?) Will be taking these complaints further.








