The Beginners Guide to ITP; What to Do After You Are Diagnosed

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Feature image by CLAUDIABRUNO

ITP or immune thrombocytopenia is classified as an autoimmune disorder.  This is because it is the immune system that targets and destroys your platelets in your blood.  ITP is diagnosed by a low platelet count after the exclusion of all other causes for this deficiency.

So you have just been diagnosed with ITP.  Firstly, welcome and don’t worry.  Having ITP is not going to ruin your life.  This article is going to walk you through the first steps you should take after your diagnosis.

It will be easy and you can learn from our mistakes.

1. Start Tracking Your Platelet Count Now

Keeping a close eye on the rise and fall of your platelet count is key to removing a lot of the FEAR and worry from ITP.  Over a long period of time, patterns will begin to emerge and you will start to connect platelet drops with other environmental factors. Continue reading

Reminder to go to the Dentist! (Random I know)

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Feature image from MISSQUITECONTRARY

On going to the dentist.

I have just been to the dentist for the first time in ten years.  I know.  That is too long.  I thought if I just made sure I BRUSHED MY TEETH correctly, I would be ok.  My dentist made her disappointment incredibly clear.

If you don’t already know, going to the dentist with ITP can be one of the worst things.  Mouths and gums are very sensitive and quite fragile.  They bleed easily. Continue reading

Is Your ITP Forever?

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Feature image from DANIELLEKLOCKE

I recently found this image online while I was looking for pictures of activated platelets.  I could not stop thinking about it.  I still can’t…

Tattoos are forever.

I keep wondering about the permanence of this tattoo, and how it has come to so literally define this ITP patient.  Obviously it would need to be in a easy to read part of the body where anyone could find it quickly.  On the arm, this person would see it every day.  People probably ask about I.T.P everyday because of that tattoo. Continue reading

The Biggest Impact ITP has on it’s Patients?

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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?

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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

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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