Has anyone traced their ITP back to DDT exposure?

My family and I have been researching trying to figure out where my ITP might have come from..my father who is know passed told me years ago I had "jerks" as a infant and was put on medication. I asked my mother and she couldn't remember anything about it. This was years and years ago. I've been fighting my platelets like crazy the past 5 months. My mother remembered this past weekend, that we lived in Mount Holly NJ and they sprayed for Mosquitoes in 1964. Right after that spraying I was a infant and developed Myoclonus tremors. I was put on drugs to stop them. She then said I had terrible nose bleeds where I would have to be taken to the hospital. Has anyone linked their ITP to DDT spraying? I researched it last night and in 1964 NJ had a huge spraying of DDT. And sprayed after that frequently. Just a little link to my own puzzle. I have read were the DDT exposure is linked to Lupus, Hashimoto's (which I have) higher risk of breast cancer etc. and low platelets.

Thanks for any input.

Interesting. I was born in 1964 in new Jersey. Hmmmm

I wonder how many more there are that were exposed..I've had ITP that I know of for 21 years..but from what my family is saying it sounds like I've had the symptoms since I was young. Kind of a crazy link but it is a link...I was born in Rhode Island but we moved to New Jersey when I was 4 months old.

I'm going to do more research on it.

Keep me posted. Let me know if i can help in the research.

When first diagnosed (35 yrs ago)I racked my brain trying to find the cause. The nearest I could come to an answer was in the 60s I would watch the crop sprayers on our farm spraying DDT. When I remembered I found I had more bruising and nosebleeds after that point but being a child never linked the two. BTW I lived in Southern England until my twenties.
I wonder if we will ever find the cause - good luck and keep us posted of your findings.

If you think about it, millions [billions?] of people were exposed to DDT; yet relatively, not many have ITP.
I'm not a scientist, but IMO it would be a stretch to say any one agent "causes" ITP for most ITP patients.
What probably is true is that environmental toxins can trigger the autoimmune response in susceptible people... Probably those with some sort of genetic defect.

Not all that much is known yet about what triggers the AI response. Since there are more than 80 identified AI diseases, you'd think someone would be investigating this a little harder.

I agree with Janet. We are all exposed to toxins every day and you don't know which one was the actual trigger(s). To my knowledge, I was not exposed to DDT, yet still had ITP and Lupus. I actually think my trigger for both was UV rays, as in the sun.

I guess then it could be said that millions of people are exposed to all sorts of toxins and the sun and immunizations and viruses and on and on but do not have ITP.

The thing is we do not know what triggers our ITP - yes it is an immune response, but idiopathic fits it just as well because idiopathic means "we just don't know what triggers ones immune system to tag & destroy platelets".

You may be correct that your ITP & lupus was triggered by the sun - DJM may be correct that her ITP was triggered by DDT [which wasn't banned in the US until 1972]. No one will ever know unless sometime in the future there is a test that will tell us why someone got what they got.

Nope. I'll never know for sure. I had a predisposition and it just happened. My point was that people are exposed to many things and something very simple and overlooked, like the sun, could have been the trigger. Knowing won't change the situation.

No known exposure to DDT or other such nasties. My last hematologist had me complete a lengthy form including such information, but seemed more interested in my family history and lifestyle choices. A gene profile I had done last year showed positive for variants commonly associated with several autoimmune disorders. That seems to be where ITP starts, so to speak. As for what the trigger was, I like the idea of UV insofar as I'm basically allergic to sunlight.

And then again Aoi - a friend of mine is allergic to the sun and she does not have ITP or any autoimmune disorders. Never knew about that until I met her - found her some gloves to wear while driving, they are lightweight but block the sun from getting to her hands/fingers.

The thing is I don't believe we can say no 'this' or 'that' is not a trigger (as I was told by an ITP expert that a certain thing could not be a trigger) because we, not even those experts, know what someone's trigger was.

I just take comfort in knowing that it may have been caused by the exposure. We can't link it to my family so far..and we have traced back to my Great Great Grandparent's. That doesn't mean they could have had it and it just wasn't diagnosed.

My family at times has been extremely down on me for the 21 years I've had this...always thinking it was something I did to cause it..it get's frustrating at times..having the same questions asked over and over by people. What is it??? How did you get it?? When I come out of remission same thing...everyone asking if I"m stressed out, what I did different...blah blah blah...

I know we are all searching for answers...I'm going to keep searching and I hope one day I find my missing piece and link all of this mess together.

Have a great night!

It just happens and the people you know should accept that. Do they ask their neighbor how he got brain cancer? DJ, I don't really have autoimmune disorders on either parents' side. It seemed to begin with me and my cousins.

I did not say that the sun causes problems for everyone. The sun is a known trigger for Lupus and Lupus flares. ITP can be the first symptom of Lupus, so it seems logical that it could trigger ITP as that first symptom in PEOPLE who are predisposed to Lupus.

I'll add that... If you're tracing specifically ITP within your ancestors' history, it would be unusual to find it. If however, you would look for any autoimmune disease at all, you might find several. It is the tendency to inherit the genetic propensity toward an autoimmune disease of any kind that is familial.
Look to your ancestors for any of the identified AI diseases and you may easily find several. Besides ITP or lupus, there's rheumatoid arthritis, MS, Sjogren, Graves', Hashimoto's, celiac, IBS, type 1 diabetes, or any others from the comprehensive list found at the AARDA website.

Even if you can't find a single one of those diseases among your entire family tree, you shouldn't allow yourself to be 'accused' of having caused your own ITP.
They aren't my family, so I feel free to ask them, "How dare you?!"

I remember those mosquito sprayings, I grew up in NY and NJ in those same years. A truck would drive around spraying clouds out behind it. Interesting.
Erica

I have Hashimotos and my sister does as well. So we do have some kind of a link somewhere. Does anyone else that was exposed to the spraying have multiple auto immune issues?

It just so frustrating to have ITP control my life right now..and not have any idea how I got it. I'm sure a lot of us feel that way from time to time.

DJM this is probably easy for me to say since I have had ITP since 1989 - but the reason ITP is controlling your life is because you are allowing it to do so. It is my opinion that you owe no one an explanation - not even your family!

May I ask what you would do with the information if it were possible to find out what triggered your ITP?

[they are still spraying some towns here for mosquitos since West Nile got here - they are doing it at night and telling people to stay inside, which I would assume means turn off your a/c & close your windows & turn off the attic fan]

I have had ITP for 21 years and really it doesn't control my life. I've worked and raised three kids with it. I've had a stroke in 2005 from it. I have had my spleen out been on most treatments, poked, transfused and cried over it. I fight and work to combat it. What does control my life is waking up and filling a toilet full of blood from a bleed. Having a count in the millions one week and 7 days later be bleeding again.

So when my ITP is bad it is extremely bad. I don't burden people with it. Most don't know I have it in my community. And I'm extremely active in my community.

What would I do with the information...I would gain some understanding as to why I have this disorder and hopefully allow someone else to with ITP some additional knowledge. What is so wrong with trying to figure out why?

Have a great night.

You had said "It just so frustrating to have ITP control my life right now"

You said your family was extremely down on you... And I said you don't owe anyone an explanation - you don't, you didn't do this to yourself so why would you have to defend yourself. As Sandi said would they ask a neighbor how he got brain cancer.

Don't recall saying it was wrong to try to figure out what triggered ITP - I do know what triggered mine - in fact I said you may be correct in thinking DDT was your trigger.

Pesticides are thought to be one of the causes of myeloma because farmers who handle it get myeloma far more often than the general population. You'd have thought that ITP would be rife among the farming community too if DDT were a cause but it isn't.

It doesn't bother me what triggered my ITP. It wouldn't help me have control over it if I did know, and nobody has ever said it's my fault so I feel no need to prove otherwise.

I get the sense you feel attacked, D.
That wasn't my intention, and I'm sure no one else's, either.

My only goal was to let you know that almost no one with ITP ever figures out what caused it. I tried for about the first 5 years. Finally decided it made no difference, because knowing wasn't going to fix it. I finally had to "let it go" for my own sanity. It's bad enough dealing with the stupid disease without multiplying the frustration by not knowing the cause.

Letting people try to blame you for being sick is the hugest frustration of all. That's the main message I wanted to send. That's about the only thing you DO have control over. If it were me, I wouldn't let anyone - not even family - wrest it away from me.

And for the record, I too have Hashimoto's. It's a very common associate of ITP.

Midewest

I'm probably a bit over sensitive right now. No offense taken and I certainly appreciate everyone's input. I feel like I've been through 5 months of ITP hell right now. I was just happy to find there might be a link. I'm still researching it but it is stated that the exposure does cause low platelets. Seems this might be where my issues started as a young child.

Wishing everyone all the best. And stable counts!!

Have a good day.