Okay, it's uploading!
Woo!
Let's see what it says!
Hello, hello!
It is Vlogmas Day 3 and I wanted to see if it was possible to spot an EDS chromosome
variant , uh, through... one of these genealogy tests!
Uh, the one that I took is 23andMe, I talked about that yesterday.
Um, I do already have an official diagnosis of classical Ehlers-Danlos Syndrome via GeneDX,
um, but I thought if this also provides that same information in the results, it might
be a much more affordable and accessible way to get them.
Um, it's not necessarily so official and on the record but it's something that might help
guide someone on a diagnosis journey in the right direction, it's something that you could
hand to your doctor and see what they think!
Um, so now what we're gonna do is a little process my friend taught me to find my medical results!
Also, I didn't mention it before... there's two things I didn't mention before!
One of them is that this is not a sponsored video but I do have a referral link that I'll
leave in the description below.
Um, and the other thing I didn't mention but it's important to note is that the most
common form of EDS is hEDS or Hypermobile type, previously known as type 3, um, but
that one, the most common one, cannot yet be identified by genetic testing.
Genetic testing is currently available for the other types, um, but it's important for
you to know your results could read negative while still having EDS.
I'm a little sniffly so I'll probably be cutting out my sneezes, just so you know.
Um, but yeah, also just so you know, again your results could read negative but you could
still have EDS. hEDS has to be tested clinically by someone who is well aware of EDS and it's
symptoms.
But you can get lots of other information as well, such as results for MCAD and more...
and as I say that now, I just realized I might learn some stuff that I don't know... about..
yet.
So that just made me a little nervous!
Ok!
Argh!
Alright. Let's start.
So here's what you have to do:
First, purchase a basic package from a genealogy service: like 23andMe, Ancestry.com, or
GenesForGood, which I heard, I'm not entirely sure, they will provide your raw data for
free.
And again, you don't have to upgrade to a health package, just get the standard basic
package.
Step 2, download the raw data from that genetic service: on 23andMe I signed in, clicked "Tools"
and "Browse Raw Data", at the bottom of the page, click "I understand" and "Download".
Bottom of the page "Submit Request", then they will email you your raw data to download,
mine arrived pretty immediately.
Go to your email, click download and it will send you to a page where you need to insert
your password and start downloading.
Alright, Step 4, now that you have your raw data file ready, you can go to livewello.com,
click "Genetics", then "Health Report Tool", then "Subscribe Now" and complete the sign up process.
Step 5, once your reach your profile, click "Purchase a gene app", you will be charged a one time
fee of 19.95, #NotSpons and I wish I was.
Step 6, then you'll be directed to a page where you can upload your raw data file to
livewello.com
It'll take a few minutes to upload.
Step 7, within minutes you can see your health results, and these should the same results
that took me about 6 months to get from medical testing.
Oh!
And I'm doing it right now!
Let's see... oh my gosh!
Okay...
So now I'm on...
Oh my god!
Oh my god, it's here!
Why am I gonna cry right now?
Okay, okay...
[uptempo smooth electronic music]
So...
When I first opened the page, I couldn't find any EDS info but at the top of the page it
says "Sample Varience Report", there you wanna pull down, it says, "Get More Variance Reports".
I'm trying this for the first time too so I'm learning!
Okay and the first thing up there is "EDS by Donna" so I'm gonna click "Install"
Okay, so I clicked "Install" and it's processing my raw data.
What other options do we have here?
So interesting!
Mast Cell Activation, that's what I was hearing about, so you can..
Wow!
This is so interesting, oh my gosh!!
So you can like...
Check on a bunch of stuff.
Alright, so what does it say here?
Once I clicked the template then click "View Report"...
EDS was the important thing, I'll investigate the Mast Cell Activation, uh, later, for myself
but I'm just trying to see if EDS comes up; if it will show me the same information that
it took me half a year to get and for a lot more than 20$!
Okay, I'm reading it now, it says COL3A1 not 5A1 and that one of my parents had the gene
and the other one didn't.
That's what my results read.
Which is confusing because I have it by memory, my gene test said COL5A1 not 3A1, um, so I'm
gonna continue to look around...
But it's there!
You know...
And I think the important thing is here if I was still looking for my diagnosis, this
is something that I'd want to show to my doctor and hopefully my doctor would see it as reason
to investigate, um, so I'm hoping that that is something that is useful to you.
Um, this may not be perfectly accurate, this may have some faults, like I said, I'm gonna
continue investigating this because this is my first time, you know, doing it.
Um, see what else I can learn.
Um...
But ultimately, I think it's worth it, I think it's worth to spent the 20$ and see what you
find and hopefully, it can help guide you on your journey.
I really wish I'd known about this when I was looking for what was happening in my body!
So this is really cool.
Alright, mmm, I'm to explore some more on this website!
Alright, well, I hope you found this video helpful.
If you're watching this I... assume that either you're.. subscribed to me or you are on your own
diagnosis journey or care about someone that is on a diagnosis journey, so I'm wishing you all
the luck in the world on finding out what's going on within you or your loved one's body
and I'll see you tomorrow for another Vlogmas video.
Alright, bye!
[outro music]
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