People Living with Blood Disorders?

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This was one of the hardest articles I have tried to write as the information pertaining to the number of people living with Blood Disorders is so difficult to quantify.  There are so many different types of Blood Disorders and even more people living with a disorder without even knowing they have.

Many people are living with a moderate or mild version of a Blood Disorder meaning they do not require regular medical support and intervention – Meaning they may not be included in the statistics collected from research and surveys. Continue reading

Robert

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp

My name is Robert, I am 54 years old and live in Northern Sydney. My story starts at the beginning of February 2014 when I started to notice some strange changes on my body. I have been fortunate in life as I have had very few illnesses and enjoyed good health by having a sensible diet and exercising each morning to try and remain fit. I have had my own consultancy business for over 25 years now which has always been busy but in the latter quarter of 2013 and into 2014 had become extremely busy.

Robert’s Diagnoses

It was on the first Sunday in February that my wife noticed a large bruise on my thigh. I had no idea why this was there as I had no recollection of bumping it and thought that I must have unknowingly done so whilst mowing the lawns and put it down to that. I had also noticed that there were small amounts of blood whenever I blew my nose, even just lightly, and there seemed to be small red dots on my lower legs but I convinced myself that maybe I was just imagining these as I felt perfectly normal.

Over the course of the week I noticed that I was getting more of these large bruises which I kept these hidden from my wife as she was concerned with the ill health of her Grandmother and also one of my children was not well and so I didn’t want to worry her. Continue reading

The Seven Stages of ITP

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How does it feel to be told that you will likely live for the next 25 years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?

How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age? – That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?

The answer to all these questions is this… fine!

Because by the end of that speech, you’re in shock.  You think to yourself…. Yes, yes, yes that is all very well and good for someone else, but none of that will happen to me (Even though at that exact moment it IS happening to you!!)  That is the beauty of shock and denial – The first stage of having ITP

Shock & Denial, the 1st Stage of ITP

When I received my diagnosis, I never felt any denial.  I told everyone about having ITP.  I was happy to discuss it and I felt ok about the diagnosis.  I thought ITP was actually quite interesting and told myself, ‘if you’re going to get anything, it may as well be something weird and different.’ Continue reading

ITP Friends

low Platelets, ITP disease, immune system disease, living with itp

It begun like this… Step back in time 6 years. I was away with friends for the weekend and was out partying at the time, when I got a call. I was sitting in the back of a car, passing champagne around and drinking from the bottle.

“I’m sick”, Meg said, as matter of fact as always.

“Oh, that’s no good,” I said, not registering the magnitude or chronic nature of the initials ITP. The long words meant nothing to me and I figured my friend would be fine soon. I still regret my callous reaction that equalled something to the significance of a cold.

Now step back again, before that call, and I remember when I first thought something was wrong. I lived with Meg in a house of girls. We would often make quick dashes to the shower in little more than our underwear. One day I looked at Meg as she walked by and I saw an incredible amount of dark bruises on her body. What struck me the most was that they were not in the normal places. Instead of bruises on her knees and shins, she had bruises on the inside of her thighs and highlighted against the porcelain white skin underneath her forearm. We discussed these bruises and figured they were nothing. Perhaps she needed to take iron tablets. Continue reading

Brushing Your Teeth with ITP

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Feature Image from DORISFERRES

A little while ago I posted a comment about how much I disliked brushing my teeth when my platelets were low.  A few people replied that they also had problems with brushing their teeth and bleeding gums.  The problem with this is that you might actually get Gum Disease as a consequence Below is a more detailed post regarding what low-platelet-oral-hygiene options there are.

Did you know that dentists are often the ones to diagnose ITP in their patients?  Dentists are known to recommend their patients to seek a consultation with their GP if they notice any abnormal bleeding without the presence of gum disease.  In this way, as many people can ignore bleeding gums, they might be the first ones to notice anything abnormal.

There are a number of reasons why your gums may bleed when you brush your teeth.  You might have ITP or you may have the beginnings of gum disease.  Your gums shouldn’t bleed when you brush your teeth.  For someone with a bleeding disorder, often the first place to bleed is the mouth and gums.  I know that the first place I notice a really low count is in the bathroom sink at about 10.30 pm.

The problem with this scenario is that I can’t always assume that my gums are bleeding because I have ITP – I might very well have gum disease as well.  This is were the confusion comes in.  People with ITP can still get gum disease and it is important to not just assume that a bit of blood in your spit as you brush your teeth is from a low platelet count.  Am I making any sense?

When I have a low platelet count, I notice my gums bleed more.  I dislike the taste of blood.  I think it tastes like metal or electricity in my mouth.  For me it is one of the worst sensations.  Therefore, I will usually avoid brushing my teeth so I don’t have to taste it.  This is a problem because I am now more likely to get another gum related, gross hygiene issue in my mouth. …and the bleeding goes on.

So what can you do to make sure your gums are always healthy and treated properly? Continue reading

Life Expectancy for ITP Patients

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

Warning – This article contains spoilers of what might be install for you.  If you wish to remain ignorant then don’t read on.  You can’t un-know something.

A few days ago, I received a harmless email from our assistant Charmaine, saying she had written up a summary of the research I asked for.  It wasn’t a big deal.  A few weeks ago I asked her to investigate the impact of ITP on predicted life expectancy for a blog post I wanted to write.  This one.  I had told her there was no rush with the research and to send it through when she had found something.

I did not expect her email to change how I thought about my life.

Life Expectancy

This is what she sent me.  ‘Based on the conducted research, Cohen, et al. predicted that a 30-year old woman remaining thrombocytopenic due to ITP would lose 20.4 years (14.9 quality-adjusted life years) of her potential life expectancy. At age 70, predicted loss was 9.4 years.  So, if a woman in her 20’s finds out that she has ITP, her predicted life span would be up to her 50’s.’

She concluded that a persistently low platelet count was a grave prognosis.

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Google Search Results for ITP Life Expectancy

As you can imagine I completely flipped out.   Fuck!  I am 28 years old now.  If I continue to act like an average person, then I will have an average of 22 years left…from now.  I couldn’t believe it.  I felt so sad and then suddenly annoyed.  I felt cheated that nobody had told me this sooner, and stupid for not searching myself.  I felt so naive for never asking more questions and confused about what it all really meant.

I wished I never knew…

And then, I sat down, made a plan and decided to get to the bottom of where this number came from and how I could make it disappear.

My Own Research

I followed up the articles that Charmaine had sent me.   I slowly read through each of them, trying to digest the dense medical terminology.  I got very confused and found myself getting mixed up between life expectancy and life quality; the difference between Chronic ITP and Acute ITP.  I am not a doctor and could not read the articles, but I tried.

My eyes where hurting and I had 6 different tabs open on the internet, I leaned back in my chair and told myself I couldn’t do this…  And that’s when I noticed something interesting.

The article I was reading was published in 2006.  It was old.  It was 8 years old!  Another article was from 2000.

Yes! I thought – Surely things have improved in the last few years.  Medical research is developing quite rapidly I would think.  My prognosis must not be all that bad after all…But I kept reading.  Everywhere I looked it was evident that ITP would have an impact on my predicted life expectancy.

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Obviously the Internet is the worst place ever to investigate medicine, so I asked my doctor(s).

They made it clear that those figures where indeed older than they should be; and that yes, things have improved and are always improving for ITP patients.

‘How much of an improvement?’ I asked.

‘We don’t know.’

My doctors stressed that these number where just averages.  I am sure they were trying to make me feel better but all I took from the conversation was that a lot of people must be dying earlier too!  Fuck again!

My doctors said it is very important to not get carried away with numbers and averages and studies on people that aren’t you – Everyone is different.  If you never heard this number before – It wouldn’t matter.  The facts would still be the facts and you may or may not outlive your life expectancy.  They all told me the best thing you can do is to live a healthy life and take care of yourself and your body.

The Problem the Research is…

The problem with reading the research is, statistics can be made to show anything.  Research can be flawed.  Tests are performed on very small testing groups.  Patients with ITP are hard to find and even harder to test on.  Everyone with ITP is different.  The selection pool is little and the statistics are tiny.

A Medical Research Scientist contacted me by phone a few months ago to see if I would be interested in participating in a clinical trial for ITP.  I said, ‘Yes’.  He then asked me a number of questions to make sure I was eligible.

  1. I had to be within a certain age range – TICK
  2. I had to have had ITP for more than 2 years – TICK.
  3. I had to not be pregnant or breastfeeding – TICK
  4. I had to have a platelet count lower than 50 – TICK
  5. I had to not be receiving any medical treatment or taken any treatment in the last 6 months…… UM – WHAT???

This man could not find anyone to participate in his study.  He doubted he would find anyone to participate.  People with ITP are hard to find, and when he does someone to study – they are not eligible.  ITP behaves and manifests itself so differently in all of us.

This scientist was taking his findings back to the medical research board to explain the problems he was having in finding candidates.  ‘Would you be interested in not taking medication to participate?’ he asked  as a very last chance.  ‘Um…No’  I replied.

The Good News – Choosing not to be ‘Average’

So I started to feel better.   I decided that this number was not for me.  I was not having it.

If you are wondering why no doctor has told you your dramatically shortened life expectancy – It’s because it doesn’t apply to you.  Not anymore.  Not if you are smart and healthy and take care of yourself.  Not if you start to understand your body and educate yourself about how to be ‘well’.

There are always things you can do to change your diet, take vitamins and supplements such as Blood Well.  To be aware of this number, I started to think is quite liberating.  After making peace with it, I now have the motivation I was looking for to take on more holistic forms of treatment.  I am going to really learn what it is to be healthy.

Continue reading