edited a doc in the group: Ehlers-Danlos ILLUSTRATED Support Worldwide EDS/POTS/MCAD/Chiari.
What changes did you make please Frank?
So how do you determine what these are and does it help your health somehow . I'm interested just don't know how it works
It doesn't really help much, it may in the future when they know more about EDS genes. The genes that I have found useful so far are ones for MTHFR and drug interaction genes.
What is the mthfr one and the drug interaction . That's what I'm wondering if helpful the drug one and if it shows how you metabolize it how how it would help
The MTHFR showed that I don't process B vitamins amongst other things so I take vitamin supplements and have made dietary changes. The drug one shows that I am a rapid metaboliser so I only need low doses of drugs and they act really quickly but also means I'm prone to a lot of the side effects. Every drug is metabolised by a Geneticist so you can tell which ones will be more effective for you. Also can be useful if on the other hand you need large doses of narcotics, this panel can explain the reason for that and make your dr more trusting that you are not an addict.
Following but confused. If you can get this all from 23and me for $100 why wait a year to see a geneticist. It seems to like a generic site like this wouldn't test for some of the uncommon genes we have.
You'd be correct. This isn't a useful test for EDS. It looks at the wrong type of data and not enough data... But genetics is really complicated and precise and hard for most people to really grasp. But SNP =/= (does not equal) mutation.
I registered my 23and me kit using the barcode on the tube and im going to mail my sample tomorrow. They will send my data to the profile i set up when i registered the kit. Is that going to cover it or do i still need to download a program to help read the results?
Livewello is a good site to use, I paid $20 for it. 23andme only gives you raw data.
They said my saliva sample wasn't adequate. Any advice on how to make sure I get a good sample?
Did you fill the vile up to the fill line, it was pretty difficult. I'm trying to remember what it said to do, was it first thing in the morning prior to eating?
Sonja Lacey I did fill it up and made sure there wasn't any foam below the line. I followed the instructions.
They didn't explain any further than that as to what was wrong with the sample?
to build on what emily said, the snps that autosomal dna look at can be indicative, but they're not diagnostic. they can give you hints of things to look at and can sometimes help convince drs to refer one for actual genetic testing.
the reason they're not diagnostic is because they're fairly common across populations, even though they're also associated with a given condition.
so someone could have a bunch of snps associated with veds, but have no family history of it, no signs or symptoms of it, and not test positive for the actual gene.
someone else might have the same snps associated with veds and actually have veds and konw it already.
or someone who has health issues no dr has ever figured out and a family history of issues aassociated with veds but who has never heard of it might see that they have the associated snps, read about veds, think "wait a minute, in my family sudden unexpected death from heart problems goes back generations, and my build and face look so much like the people i'm seeing. could i have this?" then they could ask their dr for a referral to someone who could do the actual test.
Exactly, Chris. Also, by definition, to be considered a SNP a variant MUST occur in more than 1% (so 1 in 100) of the population.
Using 23andme anyway because I wanted to see ancestry - so why not, and if I show up for certain markers in the raw data it might speed along testing. But since originally commenting dysautonomia and eds type iii have been confirmed. The sudden cardiac mystery deaths and sudden exploding aneurysms in my family only give more reason I think to *really* test for veds. Fingers crossed I don't have it
I did the 23andme genetic test but haven't a clue how to find out if I have EDS genes using it. I have a lot of EDS symptoms and really would like to know. Can anyone help me interpret it? Thanks
You can't find out if you have EDS from 23andme. It looks at the wrong information
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Angel Bellis Personette.
DIRECTIONS To Translate your 23andMe Family Tree DNA & AncestryDNA raw data to health reports.
All you need is your Raw Data: https://www.facebook.com/notes/livewello/direction s-for-your-23andme-and-ancestrydna-test-results/90 4143416263547
1) Download your Raw Data and save it to your Desktop P.C
~ 23andMe users: https://www.23andme.com/you/download/
~ AncestryDNA users: Download & unzip the Autosomal Raw Data to get the text file
2) Upload it into your LiveWello Gene App by going to: https://livewello.com/snps
Resources for understanding your standard gene report:
With your raw Data, Livewello currently gives you unlimited Health reports for about 600,000 SNPs. Those thousands of FREE Reports can be found in the LiveWello's Gene Library:
Here are some of those thousands of reports. Follow the links below and install as many as you'd like:
Ehlers-Danlos Genes: https://livewello.com/snps/library?search=EDS
POTS Genes: https://livewello.com/snps/library?search=pots
YASKO'S NUTRIGENOMIC SNPs:
THYROID RELATED ISSUES
POLYCYSTIC OVARIAN SYNDROME GENES: https://livewello.com/snps/library?action=preview& index=482838&for=demo
PORPHYRIA GENES: https://livewello.com/library/porphyria?author=dem o
THYROID GENE REPORTS: https://livewello.com/snps/library?search=THYROID
MAST CELL: https://livewello.com/snps/library?search=MAST CELL
MULTIPLE CHEMICAL SENSITIVITY: https://livewello.com/library/multiple-chemical-se nsitivity?author=demo
SCHIZOPHRENIA, BIPOLAR DISORDER AND DEPRESSION (COMBINED): https://livewello.com/library/schizophrenia-bipola r-disorder-and-depression-combined-4934?id=3564048
Things you can do with your Raw Data once they arrive: Includes documents with information you should read and share with your Healthcare Practitioner: https://www.facebook.com/notes/livewello/things-yo u-can-do-with-your-raw-data-once-they-arrive-from- 23andme-ancestry-and-/881296868548202
Tips on How to Find a Qualified and Experienced Doctor:
Steps to take when finding and sharing your Report with your Doctor:
WHAT IS LIVEWELLO ?
LiveWello is unique because for a 1- time fee of $19:95, it gives users much more than just a 900 SNP Health report: LiveWello will give you your Health report for 600,000 SNPs, AND attaches 12 resources for learning to each Gene. Each of these resources is designed to suit different learning styles. This App essentially allows users to get a Health Report for any of the 600,000 SNPs in their Raw Data. This is crucial to helping users gain a more global view of their genetic status and its impact on their health and wellness.
Livewello is also the only Genetics Application that comes with:
1) A free searchable Gene Library with unlimited access to thousands of free Health Reports that users can install:
[Tip: In the search box, enter the name of a Health issue or Gene name that applies to you personally to find and generate your report. If your search is not in the Library, use the Health Conditions or SNP Sandbox Tool.]
2) A free search-able Health Conditions tool that gives users unlimited Gene Reports based on their health issues: https://livewello.com/gwas
3) A Sandbox tool for creating an unlimited number of customized Health Reports: https://livewello.com/snps/sandbox
4) Data Apps for tracking your Functional Lab results: https://livewello.com/data-apps
5) A Lifestyle Data App to guide you in your Lifestyle Changes:
With all these features, Livewello is really the only tool you'll need to serve you throughout your journey to recovery and maintaining wellness.
10 valuable resources for those who have done their 23andMe FTDNA or AncestryDNA test:
1) Directions to translate your Genetic raw data results:
2) What to do after you receive your Gene Results:
3) NEW Livewello Health Reports Feature:
4) What does the Livewello Gene App do?
5) How to Compare your Gene Reports with friends and family members side-by-side: https://www.facebook.com/notes/livewello/how-to-co mpare-gene-reports-side-by-side/1055190757842088
6) Search and install unlimited FREE Health Reports from the Gene Library:
7) How does an App help with your Genetic Raw Data Results?
8) Tips on How to Find a Qualified and Experienced Doctor: https://docs.google.com/document/d/16BrSnsxLEQ9dmA hPUoX030sJCaK2YNyzwnnRDwFF3Kg/edit?usp=sharing
Useful notes about using Livewello:
9) About Livewello's SNP Sandbox Tool:
10) Why would you need to run a Genetics test?