The Biggest Impact ITP has on it’s Patients?

living with ITP, blogs about ITP, ITP lifestyle, platelet disorder, blood disorder

Feature image from LAURACONRAD

So it’s been a quiet little week at our house.  No news, nothing is bothering me.  It has been a strange empty week where I found myself reading articles I had put aside to read months ago.

Many of them where detailed breakdowns of microscopic bodily functions.  a few others where dense incomprehensible nonsense, and then I found this… ‘Impact of CHRONIC IMMUNE Thrombocytopenic Purpura on health related quality of life.’  These are the results from a collection of studies and focus groups from 2008…

While the paper acknowledges that platelet counts are of the utmost importance to patients and treating doctors, as they are often the only indication used to measure the success of the treatments, this paper attempts to discuss the symptoms which are not always considered.  This paper asks the question, ‘What of your quality of life?’

Yes it’s a little old, (what ITP research isn’t?)  The paper is from 2008.  Can you believe that is 7 years ago?  A life time ago in terms of medical research.  Below are stolen chunks of the literature, the results of the survey and study.

Continue reading

How Do You Want to be Treated?

ITP treatments, living with ITP, Struggling with ITP

Feature image from BLOGENLINEA

(A lazy scientific experiment)

Lately I have been thinking a lot about the word treatment.  I have heard it a thousand times in the last few weeks as I have watched my platelets fall and rise and fall again.  I have been waiting for surgery and waiting for the blood bank and waiting to get better and waiting for the bleeding to stop; and all the while I have been hearing the word treatment over and over again.

What does the word treatment actually mean?

Treatment; 1. To act or behave towards a person in a certain way.  2. To consider or regard in a certain way and deal with accordingly.  3.  Subjection to come agent or action.  4. The management in the application of medicines.

So there it is!  My treatment does not only consist of what I am given but how I am given it.  Part of my treatment from doctors and medical staff, is the way they act or behave towards me.  Since I realised this, I have not been able to stop thinking… How much of the success of a medicine is determined by the way it is delivered to the patient?

At the moment I wish I were a scientist.  I have had an idea for a few research experiments.

The first experiment would be this…There are two groups of people.  Both groups of people are about the same age and gender, with the same disease requiring the same medicine.  One group goes every week for a month to receive their medicine from an attentive, lovely, positive doctor who is interested in their lives and never treats them like a bother.  The second group go every week for a month to receive their medicine from to total asshole with no time, who does not make eye contact with the patient.

I am desperate to know what the results of this experiment would be.  I wonder if there is any research out there, about the delivery of medicine.

The second experiment would be about how people treat themselves.  I would need two groups of people again with the same disease requiring the same treatment.  I would have both groups go to the same doctor this time – BUT one group would treat themselves like sick people, and the other group would treat themselves like healthy people.

I wonder what the results would show?

How you are treated by others has a lot to do with how you treat yourself.

This week, as I head in for a number of appointments and organise more trips to specialists in Sydney, I am going to be very conscious of how I treat myself and how that effects how I am treated by others.

If I act like a sick person, will I get treated like a sick person?

If I act like an asshole, will I be treated like an asshole?

 

Why I’m glad I have an Invisible Illness

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, blood disorder, Chronic itp, itp illness, itp invisible illness

Feature image from LAURAWILLIAMS

If you ever find yourself with a spare 30 minutes, get onto Pinterest and have a look around for pins about autoimmune diseases.  That is of course, if you feel like getting really depressed about having an autoimmune disease or as Pinterest calls it, an invisible illness.

There are a great many people complaining about how others can’t see their autoimmune disorder.  Pinterest has a lot of upset people using it to spread the word about how you can’t see everyones illness and you can never understand about anyone else’s pain.

It looks a little something like this. Continue reading

Platelets, The Whole Story

Platelets, low platelets, ITP, low platelet count, low platelets, platelets low, ITP disease, immune system disease, living with itp, blood disorder, Chronic itp, platelets,

Feature image from JCWILSON Archive

Platelets.  We have heard that word a thousand times.  We know what they are and we know what they do. Right?  Platelets are just those tiny little things that float around in your blood that magically ‘plug up’ leaks when you need them.  Wrong.  Here’s the whole story, about how platelets are made, what they actually do and how they go about doing it.

What is a Normal platelet count?

A ‘Normal’ platelet count has a very wide range.  Anywhere between 150 and 450 billion platelets per litre of blood is considered normal.  Men and women often differ slightly in ‘normal’ ranges, but not consistently enough for it to be documented.  Any higher than 450 billion platelets and you are in trouble.  Any lower than 150 billion platelets and you have a very different set of problems.

TP, low platelet count, low platelets, platelets low, ITP disease, immune system disease, living with itp, blood disorder, Chronic itp, platelets,

Where do platelets come from?

Platelets are created by a larger cell in the body called a Megakarycytes.  Pictured.  No, I have never said that word out aloud.  Megakaryocytes are created from steam cells in the bone marrow.

 ITP, low platelet count, low platelets, platelets low, ITP disease, immune system disease, living with itp, blood disorder, Chronic itp, platelets,As a MEGAKARYOCYTES matures it begins to fragment into platelets that are released into the blood.  This fragmentation of the megakaryocytes is very important because it is triggered by the hormone THROMBOPOIETIN. Continue reading

Things I Don’t Do Now.

living with low platelets, ITP, low platelet count, low platelets, platelets low, ITP disease, immune system disease, living with itp, blood disorder, Chronic itp, platelets,
  • Clean up the broken glass.

It is Christmas day at my house.  And my mother is handing out presents to the grand children, when a glass candleholder is knocked and breaks on the floor.  Glass shatters and skids across the floor.  The children hold their breath.  Everyone’s eyes turn to mum as she looks down, making sure everything is alright. And finally someone stands up and asks me where the dust pan is.  Of course, it is my house, I should have made a move to help.  It should have been me, but I leaned away from the glass, pulled my legs in and waited for someone else to deal with it. I’m never going to be the one that stands up first to a broken wine glass.  I am scared of broken things.  And that’s as simply as I can put it.

  • Sprint across the street between cars.

I used to do this.  Anyone who has ever lived near King Street in Newtown will know what I am talking about.  A  notoriously congested street near my old house, that I used to dash back and forth across. Now I am more deliberate and cautious.  I wait for larger gaps between cars and I always walk.  I always make eye contact with the driver, like I have told my nieces and nephew to do.  If the drivers have not seen me I tend not to cross, even if I am sure I could make it. Continue reading

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! Continue reading