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.
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.
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.
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.
- I had to be within a certain age range – TICK
- I had to have had ITP for more than 2 years – TICK.
- I had to not be pregnant or breastfeeding – TICK
- I had to have a platelet count lower than 50 – TICK
- 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.
I am researching alternative therapies and have started reading Make Peace with your Plate by Jess Ainscough. This is a picture of me making one of her juice recipes. It was earthy but also delicious. As my friend Susie would say, ‘It tasted like the ground’, but I will go back for more.
There are so many myths out there about what being healthy really is. I need to get to the bottom of it – And Jess is helping me get there.
Knowing what the average life expectancy for patients with ITP is, has reminded me to be more than average. I am now looking for a better, more informed life style. I have been motivated to learn a thousand more things about my own health, wellness and lifestyle.
Realistically I know that ITP will have an effect on my life. I just need to remind myself to always treat my body better. I am not going to get carried away with the number. I am just going to be good to myself.
The research for this article has come from a number of different medical journals. If you are interested in reading more you can find them here. I recommend you don’t read them, (I recommend you read this instead) but it is up to you.
- The Bleeding Risk and Natural history of ITP patients with persistently low Platelet counts. From the US National Library of MedicineNational Institutes of Health Cohen YC1, Djulbegovic B, Shamai-Lubovitz O, Mozes B.
- American Society of Hematology – ITP in the 21st Century Session discussion with Diana S. Beardsley Session Chair: James N. George, MD – Speakers: Diana S. Beardsley, MD, PhD; Theodore E. Warkentin, MD; and J. Evan Sadler, MD, PhD
- Impact of Chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life. Turner6, Albert Wu5, James B Bussel7, James N George8, Robert McMillan9, Diane Kholos Wysocki10 and Janet L Nichol – Published through Health and Quality of Life Outcomes.