ITP Awareness Month: My story

September is ITP Awareness Month, so I thought I’d share my ITP story with you. First, some key bits of information so that you know why it’s such a big deal:

  • ITP stands for idiopathic thrombocytopenic purpura which is, essentially, a very low platelet count. A normal count is 150,000-400,000 (generally said as 150-400).
  • The lower the number, the higher your risk of bruising and prolonged bleeding/healing – or at the extreme, spontaneous internal bleeding and haemorrhaging (“brain bleeds” and such).
  • It is classified as a rare autoimmune disease.

This story is about my personal journey. If you want more information on ITP, check out the following links:

Right. Now let’s get this story going!

My story began in late 1995 when I was just 21 years old. My energy levels were sapped and I could barely drag myself out of bed most days. My arms and legs were covered with bruises; my gums bled when I brushed my teeth; cuts took ages to stop bleeding and even longer to heal. It took a while for me to fully realise that something was wrong, at which time I went to the local clinic to be checked out. By this time it was January 1996.

It was only an hour later when I was called back into the clinic for more blood work because my platelet count was in the single digits and they thought it might be wrong. A subsequent draw gave similar results. Then there was a bit of panic with the nurses and doctors who were making loads of phone calls before prescribing me some prednisone and asking me to come back the following day.

In the days to follow, I had my blood drawn almost every day. I also began to experience the evil side effects of steroids. But despite the medication, my platelet counts never rose above 30. I was frightened, to say the least.

Soon, my rural family doctor made an appointment for me with a haematologist in Seattle. I didn’t have anyone to take with me, so I made my way on my own and found that the haematologist’s office was in the Oncology Unit. You know, like cancer! As I sat there in the waiting room, watching cancer patients come and go, I began to cry. I was even more frightened by this time and there was no one there to hold my hand.

Meeting with the haematologist was strange. She talked to me about the possible causes including leukaemia. She also talked to me about the various tests she needed to run – some of which required bone marrow aspirations. As I left the hospital, I was shaking. I was still no closer to knowing what was wrong with me, but I was increasingly frightened that it was the worst-case scenario. (The side effects from the evil prednisone didn’t help.)

Eventually, it was decided that I had ITP and that they would do a splenectomy to “cure” me – a decision I felt I was bullied into at the time and one that I regret to this day. My surgery was in April 1996 and by June of that year, my counts had stabilised to a “normal” count of around 160, though they would drop to the 80s when I had a cold or other illness.

Unfortunately, by February 2002 my body decided that stable wasn’t good enough and my counts took a drastic nosedive – with a count of six (yes, 6) on my birthday. Once again, I found myself back on the prednisone. And, once again, I found myself frightened. But because the prednisone wasn’t working this time, they put me on azathioprine as well.

It took several months for my body to regulate itself again, only this time it stabilised at an average count of 70-80. Which meant that getting sick means drops of 40 or below.

Today, my average counts are still around 80, but I have had a couple of 150-180 counts, too. (Which makes me happy.) But, sadly, I still get low counts (my last low was 13 back in March).

What does this mean for my life? Well, it means that I have to listen to my body. It means that I have to be careful and pay attention to any new bruise. It means I have to keep an eye out for signs of a low count (fatigue, petechiae, nose/gum bleeds). It means that when I get a cold, I get a double-whammy of a low count. It means I have to be careful around things that can lower my counts (chemicals, certain foods). And, frustratingly, it means that I have to argue with people who think that I need to be treated like an invalid.

But I can still live my life. I can still run and play and do things. Yes, I have to be careful and I have to use common sense, but that doesn’t mean I don’t get to enjoy life.

So, that’s my story. It’s not interesting or anything, but at least I’m alive to tell it!

[That’s a picture of my platelets that I drew when I had a count of 10 in January 2011.]

12 Replies to “ITP Awareness Month: My story”

  1. We(your friends) always knew you were special, Frances. It’s just that the oncology ward is not the ward we ever expected(or wanted) to find you in or even near?!

  2. Hello, newly diagnosed itp sufferer here! I’m just curious as to which foods you avoid, does it make a difference? Thanks for sharing your story x

    1. Hi Starmum, thanks for getting in touch. As you may know, ITP affects everyone differently. We can all tolerate different levels before having symptoms, and we each have different triggers for what causes a drop. And sometimes, those triggers can change.
      This link has a list of different things that may affect platelets–either destroying them or changing their function. It’s only a rough guide and is not necessarily something that will be true for you.
      In my own world, I’ve found that certain medications (paracetamol, acetaminophen) can cause a dip in my platelets. Also, being around chemicals (bleach, chlorine) can lower them. Sadly, that means I forgo pills when I have a headache (doesn’t happen often, thankfully!) and I don’t go to swimming pools.
      With the foods, I don’t avoid anything 100% but I do watch my intake on certain things. A handful of blueberries every few days or a ginger cookie is OK, but I won’t eat piles and piles of either day after day after day. And if I notice I’m bruising more–or if I know my counts are below 50–I steer well clear of everything on that list until I’m back to ‘my normal’.
      I say all of this based on my own experiences and it should not be taken as medical advice. I urge you to talk to your doctor and to pay attention to any clues your own body may be giving you. There is a support forum from the site linked above (I never use it) and there are loads of other resources online for you to access, too. Feel free to get in touch with me if you’d like, too.
      And remember–this is not a death sentence! I’ve been dealing with it for 17+ years, I am a marathon runner, I travel the world, and I live a full life. But I don’t juggle knives or participate in contact sports.

  3. thanks for your story – always interesting to read other peoples stories.I was diagnosed 10 years ago,and my haematologist has tried to “bully” me into a splenectomy on many occasions.I refused Because I read so many stories from people who continued to have a low platelet count afterwards.I didnt see the point of major surgery if it wasnt effective. Without the surgery my counts have varied , low for a few months , then 80 – 90 for a few months – but I’m good, no major problems. Good luck hope you contine to stay well. Chris S.

    1. Thanks for your reply. At the time I was diagnosed, I was very young and trusting of medical professionals. It was also before the Internet was what it is now so I really didn’t have all of the tools I needed to do the research–or the courage to fight against my doctors. If I knew then what I know now (or even what I knew five years later!) I never would have allowed it.
      I hope that you’re able to maintain a safe level without surgery or medications!

  4. I had heard you speak of the count before, I don’t like to pry, so I am glad you explained it. That must be very scary, but you are handling it as best as possible. Thanks for sharing. It helps others.

    1. Yeah, I always forget that not everyone knows all the details. It’s not so scary most of the time, but I do get panicked and paranoid when I get sick or when I know my counts are low. I’m very careful and really do pay attention to my body–right down to inspecting my arms and legs when I go to bed at night and again in the morning to see if there are bruises. If there are none when I go to bed, but they’re there when I wake up, it’s a problem!!

  5. Great summary of your journey, thanks for sharing. We have a very similar attitude of getting on with it and not being treated as an invalid!

    1. Hi, Danielle. Thanks for your comment. It is certainly a balance between getting on with it and being sensible, but I’ve managed for more than 25 years now. One of the hard things is not letting people treat me as an invalid all the time, but also letting people know when I need to take it easy. As with many “invisible” illnesses, people don’t understand. Especially when I can run a marathon when I’m “healthy” but can be on bedrest for a few days the following month because I caught a cold — I am sure you understand the struggle of being a “healthy sick person”!!

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