OK, I've seen it written down twice now..........

...............so I need to ask this question!

is there any real evidence that ITP is becoming more common?

(sorry, put this in the wrong section AGAIN!)

I don't know. I haven't seen that. I have always thought ITP was common since I've personally known a few people that have had it. My sister had it in 1982 years before I did, so I knew what it was when I was diagnosed.

I really think it's under-reported, so how could anyone really know how many people have it?

It's still defined as an orphan disease so the numbers can't be that great. I've read papers from way back and the incidence has always been stated as roughly the same down the years.

I know that, but don't necessarily agree with it. I don't know why it's considered an orphan disease. Maybe seeing so many people (thousands) here over the years and actually knowing people has made me feel this way.

It meets the definition for an orphan disease. In the UK that is fewer than 5 per 10,000 of the population. In the US it's simply fewer than 200,000 people.

I still haven't met anyone else with ITP, not in normal life. I have at the hospital of course but that's an artificial meet.

How do they know though? Do doctors report their ITP cases?

For me, it's just like medication side effects. If they don't get reported, they are not listed or the percentages are not right. I asked my doctor if he was going to report my serum sickness to the FDA. He said no. I reported it. How often does that happen? There are probably double or triple the cases of serum sickness than are actually counted.

Oh they know. Stats are collected. In the UK there's a database called HES, Hospital Episode Statistics, where every hospital visit and outcome is recorded. Other bodies draw on that info for various reasons, to plan for future care etc. So when someone does ITP research or writes a paper they can get the relevant statistics.

In the US you have the NCHS, the National Center for Health Statistics.

I don't know if it is becoming more common. In 10 years, I've not met anyone face-to-face who had ITP.
My wife has only met one other person who had ITP....yet she manages a large family medical facility.
Actually, the only person I know who has any bleeding disorder is my twin sister Jill...and she has something entirely different.

So in theory then, as most ITP cases end up in hospital at some point, the UK and US hospital records ought to be able to be used to tell whether incidence is increasing over time?

Has anyone actually done this analysis then? Or are the statements I've seen about incidence increasing just personal experience? I was curious because I've seen similar statements about other auto-immune illnesses being on the increase.

Its clearly still very uncommon. In the three years that my son has been diagnosed, I've only heard of one other person with it (apart from the people I've met at the ITP conference that is) and that is the sister in law of one of my work colleagues.

Incidentally, one of the places I've seen it written is on a PDSA poster advertising September as ITP awareness month - someone had shared it on the Facebook group.

" ITP is a growing but little understood medical problem that most people have never heard of....."

I've never read or heard this before, so I was curious as to what it was based on, thats all!

Ann wrote: Oh they know. Stats are collected. In the UK there's a database called HES, Hospital Episode Statistics, where every hospital visit and outcome is recorded. Other bodies draw on that info for various reasons, to plan for future care etc. So when someone does ITP research or writes a paper they can get the relevant statistics.

In the US you have the NCHS, the National Center for Health Statistics.

I've never been to the hospital for ITP. I'm sure there are others. I'm not arguing, just trying to get the facts straight on this.

Interesting subject...I think ITP is probably more common then we think. We seem to have people coming and going here and there is new people all the time.
In Australia we hear very little about ITP unless someone that is in the public eye gets it, like a sports player. In the three years I have had it I have seen three news articles about ITP.

I did ask my doctor about this one day and he said over the years he has been a doctor I was the fourth person he has had with ITP (he is in his 50's). Australia's population is no where near the US so I guess that would account for the lower numbers.

I have never even met anyone that has heard of it, but I do live in a small country town (population about 40k)

Sandi wrote: I've never been to the hospital for ITP. I'm sure there are others. I'm not arguing, just trying to get the facts straight on this.

You've never seen a haematologist as an outpatient? We all do here. ITP is never, or should never, here that is, be treated by a GP.

Reasons I have assumed ITP is fairly rare:
1. I've been alive a long time and met a lot of people and outside of ITP gatherings, I've only known of one other person who was diagnosed with it--that more than 10 years after I was diagnosed.
2. A lot of medical personnel haven't heard of ITP--I have to explain it to them (most nurses and phlebotomists).
3. I think I'm my hematologist's only ITP patient--and I'm in Oakland, CA, not a small community.
4. When I had my splenectomy, small groups of residents, interns, and/or medical students came to look at me in the hospital. They didn't quite know what to ask me, but it was clear to me that they had been sent to look at something novel.

When I was first getting treated for ITP back in 2001 my GP doctor said her mom had it. Unfortunately she is no longer in practice.

Ann wrote:

Sandi wrote: I've never been to the hospital for ITP. I'm sure there are others. I'm not arguing, just trying to get the facts straight on this.

You've never seen a haematologist as an outpatient? We all do here. ITP is never, or should never, here that is, be treated by a GP.

Yes, I do see a hematologist, but it is just at his office. Even when I had Win-Rho and Rituxan, it was done at the office. So was the bone marrow biopsy. I've been to the hospital a few times over the years, but never for ITP.

Specialists don't have offices in the UK, 'tis all done at Outpatients departments attached to hospitals. I have no idea how statistics are collected in the US, but I suspect that they are. If you really wanted to know I'm sure a few google searches would bring up something.

Just came across this article in the Platelet News:

HOW MANY PEOPLE HAVE ITP? NEW INFO

To determine the number of people diagnosed with primary ITP at a given time (prevalence), researches in Oklahoma contacted 93 hematologists and tracked the number of patients who were given a diagnostic code of ICD-9-CM 287.3 (primary thrombocytopenia). Eight-seven physician offices responded with details. The results showed an average annual prevalence of 8.1 per 100,000 people for children and 12.1 per 100,000 people for adults. Men over 80 years old had the highest prevalence.

Note: While this study was carefully designed, the prevalence of ITP could be higher than these statistics show if they included secondary ITP and ITP patients who see heath care providers other than those answering the survey.

Terrell DR. "Prevalence of primary immune thrombocytopenia in Oklahoma." Am J Hematol. 2012 May 14. www.ncbi.nlm.nih.gov/pubmed/22674643

Unless one has symptoms, how would one know if Platelets are low? My counts started being monitored as I have a yearly CBC that is provided at my job and the Platelets were flagged as L.

I suppose that's true of any and all diseases. Plenty of people walking about with tumours who don't know about it.

Hi everyone i have had itp for 36 years and have never in all this time outside of hospital specialist clinics met any one else with itp so it must be quite rare and i dont think i could have missed the tell tale black and blue skin tones on anyone else. Diane