Genetic Testing?

I am considering buying the online genetic kit- has anyone done it? If so, did it shed light on your platelet issue?

I am very tired of no one knowing anything when I go to the Docs. They keep saying could be this or that, but I was thinking if I get a genetic test I would know my own risk and it might help them, too.

It can test for things like predisposition to lupus, lymphoma, MDS and many other disorders than can cause low platelets.

I am just wondering if anyone has done it.

Thanks,
Sorenna

Sorenna:

To me, that is like opening Pandora's Box. If I had known years ago that I would end up with ITP and Lupus, it might have been nothing but a cloud hanging over my head. There isn't much you can do to change the situation except try to live healthy. You can do that anyway.

I've thought about having my daughter's tested for certain antibodies, but realized that it wouldn't do anyone any good. The only thing it would do is cause worry and heartache.

One other thing. If you find out that information and it gets into your medical records, it will destroy your ability to get health and life insurance easily.

I'm not sure how reliable those tests would be too - could be a rip off.

And what would you do with this information?

There was a spot on our local news the other night about DNA testing being sold at Walgreen's sometime soon - I did hear the station's resident doctor say might not be all that reliable.

Personally I didn't even listen to it because I'm not going to have my DNA floating out there where I don't have control over it.

<<The Genetic Information Non-Discrimination Act (GINA) makes it illegal for health insurers to deny coverage or charge a higher rate or premium to an otherwise healthy individual found to have a potential genetic condition or genetic predisposition towards a disease or disorder. GINA also makes it illegal for employers to use an employee's genetic information when making hiring, firing, placement, or promotion decisions. The House and Senate passed the bill, sponsored by Rep. Louise Slaughter (D-N.Y.), during the 110th Congress.>>
www.sourcewatch.org/index.php?title=Genetic_Information_Non-Discrimination_Act

Actually I was kind of interested in the Walgreens test too. But if I had a risk for something like Huntingdons (sp?) which they can actually test for (what Woody Guthrie died from) I don't think I'd want to know. I think they aren't going to be selling it, there were recent news stories.
Erica

They can't tell anything about ITP anyway. The UK ITP Registry people are doing genetic testing on saliva samples .. I sent them mine.. to see if they can find a common gene or genes that would account for ITP. They think there may be different types of ITP which would account for the fact that some treatments work for some of us and others don't. If they can work out which affected gene works with which treatment it would make it much easier to treat new patients. Just test their DNA and find the defective gene and know which treatment to give. But it's a way off yet.

I was genetically tested to see if I carry the BRCA1 gene, which I do, but that was done at the hospital and is reputable; don't think I'd buy one off the shelves at a store. When one of my neighbors asked me why I even had it done, I told her it was recommended by a couple of doctors since Cancer runs in my family on my dad's side. Yes, I know I carry the gene, but I don't let it bother me.

As for being tested for anything else, I don't think I would/will. I'll take whatever comes my way.

Cindy - I think that one is a little different. I'd test for that one too if ti ran in my family.

I know my dna was tested when i had my bloods done soon after diagnoses. I was not told why though i just thought it was a normal procedure.
julia

If it was for the research then you would have had to fill in forms and sign things. It's not a routine procedure.

It wasn't the anti-dsDNA blood test was it which is a specific antibody test for automminue disease, lupus really.

So...what exactly are the chances that you could acquire something like ITP and other autoimmune disorders if NO ONE in your family, including extended family, has anything? Also, no one in my family has had cancer. All my "elders" (affectionately refererred to...) have lived to be 85 or more! And looky here...I HAVE ITP! Man, I hit the jackpot. Really, what are the chances of that crap. Damn! The genetic test is tempting, but just like someone said perfectly: "It would be like opening pandora's box." It would completely add to my paranoia and hypochondriatic (sp? haha is that even a word...it is now) tendencies.

Natalie

Thank you all for the responses! I have indeed considered what it might do to know, but psychologically I am in a good place to know. Not knowing is beginning to wear me down. I agree with the poster who said no one in her family had anything.....same here. I cannot help but think it may have been a shot I had to take after pregnancy.

The whole thing is perplexing and maddening and I just learned ITP is an "orphan disease" meaning that so few have it that they really have not researched it properly and thus no really true adequate medication. There are some, but not a clear cut treatment. I do not understand this either, because hemophilia is also a rare disease and there are many treatments and centers of help.


I will let anyone who is interested know my results. It might shed light on something for someone!

Sorenna, can you give a link to the online test you are going to buy? I'd like to see what they can test for.

Sorenna1 wrote:

The whole thing is perplexing and maddening and I just learned ITP is an "orphan disease" meaning that so few have it that they really have not researched it properly and thus no really true adequate medication. There are some, but not a clear cut treatment. I do not understand this either, because hemophilia is also a rare disease and there are many treatments and centers of help.

I was interested in this comment so I looked up the incidence of haemophilia and find that it is about 1 in 5,000 births. ITP in adults on the other hand has an annual incidence of between 1 and 2 in 100,000. So the two are not really comparable.

I also think that there is quite a lot of research into ITP going on around the world. If you were to read up on it and read the various reports you would see how many papers are written. A good place to search on the net is via google scholar scholar.google.co.uk/ .

The various ITP Registries have also been set up to do research into the how and why ITP occurs, and of course the drug companies do their own work researching treatments. We now have romiplostim and eltrombopag licenced and a few more in the pipeline. A list of clinical studies is at clinicaltrials.gov/ct2/results?term=itp .

If you are interested in finding out more about ITP and what is going on and how things are changing, you could do no better than attending one of the ITP conferences that are held in both the US and the UK.