rx symptoms of disease vs finding root causes

I am really tired of having my symptoms treated with no attention given to the cause of the ITP problem.
Does anyone know if there is a data base of ITP patients with their age, age when onset of symptoms
occurred, occupation, theories of cause or triggers.... things of that nature?
It seems as if the medical community is far more interested in treating symptoms of disease than finding root causes. I take it because it is easier and far more profitable.

There has been research on root causes of autoimmune disorders for many years. It boils down to genetic predisposition along with a trigger(s) that comes along at one point. Very few people can pin point what their trigger was. Some people developed ITP after an illness, some after taking a medication, and some have absolutely no idea. If anyone could reverse any of the autoimmune disorders, they would be famous. Every single one of them is treated, not cured, and none of the medications are ideal.

Here is an interesting article about ITP that explains some of the theories. It's not as easy to solve as it seems.

www.medicine.wisc.edu/~williams/itppathogenesis.pdf

This is the reason I refuse to have my spleen removed. The spleen is not the cause of my low platelets my immune system is. My spleen is just doing its job!

I understand all of your comments but there does not seem to be an organized data base that is available to group individuals into common categories that may, or may not, provide common factors in their lives. Would it not be beneficial to have a listing of what occupations persons with similar ITP types ( destructive or productive )along with other factors. With the capabilities of computer programs today it would seem those types of studies and analysis would be ongoing. I am not talking about reversal of a disease I am talking about finding causes and eliminating those causes from ones lifestyle. i.e. If person is allergic to peanuts they stay away from peanuts. Just as I came across a post where an individual suspects chlorine may be one of his "triggers that cause his counts to drop and I happened to start working with chlorine a few moths before my first episode of ITP. Coincidence, maybe, maybe not.
I am not saying it would be easy to solve ITP, but some sort of data bases would surely be beneficial. I am just suggesting it is easier for doctors to follow the regime of treatment methods than to take long boring histories of patients and compare them to histories of patients world wide ( if there were ever those sort of data bases available... someone would have to take the time to compile and input the data). And where is the profit in that, order some more drugs prescribe them and see if works...a lot easier.

It would be nice to say here's a list of information we found that this or that is the common ground so therefore the cause.

I am a big believer in triggers!

They say smoking causes cancer. So why doesn't everyone who smokes get cancer. The truth is research shows that we all have the cancer gene/ cell in our bodies. It is what triggers or turns on the cancer cell. That said it can be many things that trigger it. Smoking, work envirnment, family history you name it.

I believe the same for ITP and all other disease some just don't have a cause but a trigger. If chlorine is your trigger than removing yourself from the exposure and do a detox than you should return to normal. That is if removing the trigger stops it.


That said having a data base that was even just a web site where you filled in your name age work environment and family history. Could help to find triggers just one problem unless your a controlled study or some scientific study I doubt you will get anyone to listen to what you find.


On the other hand people may be able to form their own opinions on how and why they ended up with ITP.



For me I was a little girl who would get hives. Had allergies to many things growing up. It got to the point I gave up and just assumed when I got hives that I came in contact with something my body didn't like. I believe that is why I treat my ITP symptoms not the numbers. I believe that is why I walk around sometimes with bruises and spots, because if your platelets are low you have to expect those symptoms.
I did the questions of why me but didn't push for a cause! The more I researched ITP the more I realized as much as all of have the same main symptoms the disease reacts differently to everyone.

J:

You're talking about two different things. Some doctors treat patients and some doctors research. A treating doctor can only go by and use the treatments that have been provided to them by the ones who research. The researchers are busy looking at causes and age ranges and gender, etc., but it is a very broad range that you're talking about here. Anyone from a baby to an 85 year old can be diagnosed with ITP. We've had someone here convinced that mostly teachers got ITP because of all the exposure to illnesses. That was disproved when we had posts with many different types of jobs.

We did have our own polls here long ago; it used to be an option on the Forum. There was never a common issue that any of us could detect. We all lived in different locations, had varied careers, were different ages, etc.

Allergies to peanuts are a little different. You know what the problem is and simply avoid it. Eliminating a possible ITP trigger may not work because the damage to the immune system is already done. Did you read the article I posted? It mentions that theory. Think of other autoimmune disorders....Ankylosing spondylitis, Antiphospholipid syndrome, Hashimoto’s thyroiditis, Meniere’s disease, MS, Rheumatoid arthritis, Vasculitis, to name a few. Would you think that simply eliminating something would make things better? ITP isn't any different.

I'm not saying it can't be done on an individual basis. A few people have had a rise in counts by changing diet...elimination of gluten is good place to start if you are considering that. But it hasn't worked for everyone, nor has any other thing that's been tried by more than one person over the years.

Here is another article about a few known underlying causes of ITP. Some people do not know until years later that there was another underlying cause because ITP can sometimes be the first symptom. I am one of those people. I had "just" ITP for 8 years, then was diagnosed with both Lupus and APS. Both are underlying disorders which can be preceded by ITP. That is another reason why it can be so hard to detect a reason...it may not have developed enough to show it's face.

www.ccjm.org/content/78/6/358.full

Keep talking. This is what causes brainstorming and that is never a bad thing.

Here's another good one.

bloodjournal.hematologylibrary.org/content/113/26/6511.full?sid=25179f30-978f-4fb4-97a0-ac8402bc33f5

Can't help but think if research were as profitable and easy as prescribing the same rx over and over there would be a whole lot more research out there.
I would sure like to get ahold of some of the data in those surveys you referenced.
I have to get off of here but I'll be back. Just something I want to address first. I was reading from a different thread a few days ago and seen a comment concerning mandatory rx from Dr.'s and hospitals in the US. I believe you commented something along the lines that policies in the US no longer followed protocol that included forced admittance and treatment of ITP based solely on CBC that included low thrombocyte counts. About two weeks ago I went to the hospital for some blood work and had a PLT count of 35k. A physician came out and informed I would have to be admitted to the hospital at this time, I had a life threatening blood condition. I was informed that they had already sent a request for platelets for a transfusion process and my room was being readied. I had to request and sign a AMA before they would let me leave that hospital. They were not even going to inform me I had an option of signing an AMA. (I swear I thought I could see the dollar signs flashing in the guys eyes) That is not first time I have had to sign Against Medical Advice paperwork that negatively effects my health and life insurance coverage. No petechial, no purpura and consistent reassurance to physicians that I have been living with ITP for over a decade. Just wanted to address that before I forgot about it.
Thanks for the links,(I am familiar with a couple of them but will definitely review them all), and data.

Holy smokes - that was one misinformed doctor you had there! Admittance and transfusion with 35k? I can see an ER doctor being concerned...they are not all that informed about ITP. I once had an ER doctor who didn't believe that my count was 3k a few days before (I was there for a different reason). He said there was no way I'd have been working and driving around like that. Wrong!

As for just seeing $$ signs, I tend to disagree. Insurance companies make darn sure that patients do not spend one second more than necessary in the hospital. A lot of surgeries are done outpatient and the person goes home the same day.

Let me assure you that there is ITP research going on. There are some ITP specialists who have spent years researching. Go to www.bloodjournal.org . They have been researching for many years. In the past 10 years, things have come a very long way.

My own experiences confirm what Sandy says--I am pretty sure that what triggered my ITP 12-1/2 years ago was the NSaid Voltaren, but obviously this is not a trigger for at least 99% of other ITPers. And I immediately ceased all NSaids--and my ITP didn't improve. Although I favor research into causes of ITP, I frankly don't believe this research is likely to help me in my dealing with the disorder.

J:

There is an ITP registry in the UK that is studying the types of things you are asking about.

I'm sorry your view of the medical profession has been soured by a few bad experiences. I believe a lot of people become doctors to help people. I am not a doctor...I couldn't make it through the 8-10 years of school that it takes.

Perhaps you'd feel better about seeing a doctor in a teaching hospital or someplace where the doctors are on salary. It sounds like maybe you've seen doctors that own their own practices and that perhaps do somehow make more money by hospitalizing a patient. I know there are some hospital systems that encourage hospitalization (I just saw a Rock Center story on it), but I don't believe that's the norm.