Is ITP actually that ‘rare’?

what is ITP, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder

Feature image from SUPIKUKU

The other day I was reading an article about ITP that popped up in my Facebook Newsfeed.  I forget exactly what it was about but the article defined ITP as a rare blood disorder.  What struck me, as I was reading, was the word rare.  I started to wonder if it were actually true; is ITP a rare disorder?

I thought back to an old article I wrote about PEOPLE LIVING WITH BLOOD DISORDERS, and while the numbers where certainly estimations at best, ITP effects more than 2000 people in Australia every day.  That seems like a lot!

According to Google, more than 5,000 people get online every month and research ‘What is ITP?’.  That’s 60,000 people every year.  The Platelet Disorder Support Association has more than 5 000 FOLLOWERS on Facebook.  There is an annual ITP Conference held in America every year, and that only covers the English speakers.  ITP France has a support group.  ITP New Zealand has a support group.  ITP Ireland has a support group.  Everywhere I looked I found groups of people with ITP coming together.

Perhaps ITP is not really that rare after all?  

Perhaps we are just disorganised and too spread out!

What makes a disease rare?  There are over 8 000 rare diseases registered in Australia.  ITP is one of them.  In Australia, a rare disease is classified as a condition that effects 1 in 10,000 people or less.  This statistic means that ITP barely scrapes through with board line rarity.

A lot of people have commented that many doctors have not known what ITP was.  That has never been the case for me.  Every doctor I have ever seen as been very well informed about ITP.  A recent trip to the dentist even confirmed that my dentist knew all about ITP.

When I actually started to look for rare diseases I found this one, PROGERIA.  Progeria is a disease defined mostly by its rapid ageing of the human body.  Life expectancy for a Progeria patient is around 20 years old, however most children do not live past 13.  This is a disease that is so rare it has only presented itself 140 times in medical history.  Now this is a rare disease!

If we as ITP’ers adopt the word ‘rare’ to describe our disorder, then what hope do these guys have of conveying the significance of their condition?

ITP for the most part is simple unknown to many.  In the 7 years since my diagnosis, I have never come across a person who has replied, ‘Oh yeah, ITP, sure I know all about that, easy!’

ITP is a misunderstood and poorly publicised disorder.  It is not often in the news or media and does not really get much attention from anywhere.  Referring to ITP as a rare blood disorder often feels like a means to get it into the media.

What do you think?  It is time to ditch the rare part and start living as a full blown Autoimmune disorder – Or – are we still hanging on the to rare title because it gives us a little touch of drama?

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

3 thoughts on “Is ITP actually that ‘rare’?

  1. rbushell@stratdev.com.au'
    Robert says:

    Meg
    I would agree with your comments. Whilst many of those outside the medical profession have never heard of ITP, from my experience every doctor I have spoken to or others who had mentioned it to their doctor was well aware of the condition. I had to have an operation (not a splenectomy) late last year and as soon as I mentioned to the surgeon that I had had refractory ITP but had by then been in remission for 8 weeks, I instantly noticed the concern on his face.
    The estimations of those people with ITP varies widely on the numerous websites that I have seen as does the platelet level threshold for being diagnosed with the condition, so I am not sure if the use of the term ‘rare’ is as appropriate as some would have us believe.
    Regards Robert

  2. christachic@hotmail.com'
    Christa says:

    I know why you mean about saying and being “Rare”. My haematologist made it sound this way to me from a very young age and I felt very alone because of it . I never actually met anyone else in Australia or where I grew up with it or had the internet back then to share stories, so yes it’s an interesting term. It’s great now to see Itp more widely known and shared on the internet. I was diagnosed at 6 years old but was born with it and now 30. I guess its just part of me I’m used to dealing with it solo 🙂

  3. smastenmk@gmail.com'
    Sydney says:

    One way to tell if a disease/disorder is rare= is it listed in the National Organization for Rare Diseases (NORD) site?

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