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ITP Awareness Month: An iceless challenge

This entry was posted on Monday, September 1st, 2014 by Frances Ryan.
Tags: itp, inspirations, health, fear, faith

Right! It’s ITP Awareness Month again so let’s start raising some awareness! I decided to tackle awareness month differently this year, because I think we need to start shouting a bit louder. After all, sometimes you have to raise your voice to raise awareness.

What is ITP?

- 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 year, instead of doing one post about my own life with ITP (as I did in 2012 and 2013), I am going to attempt at sharing a few stories over the course of the month. Some by me, some by others. (If I can find the others, that is. Volunteers can pop me a note here.)

And not only am I going to shout more, but I’m going to ask you to shout, too!

OK, we won’t really shout, but I want to challenge you to talk to your family and friends about ITP. I want to challenge you to share your story and to really help spread awareness this year. I want you to share information about ITP on Facebook, on Twitter, on your blog—or even here if you want to write a guest post. (You can write anonymously if you’d like.)

There are no ice buckets involved (unless you want to douse yourself) but you can still share a video if you’d like. Just do something!

The thing is, ITP is a rare disease but not so rare that it doesn’t impact a fair number of people around the world. However, the rareness means that it’s harder to find information online; it’s harder to find others that we can connect with. That’s why I share my experiences here—so that someone, somewhere can find a bit of information from someone who is “like them”.

And if more of us shared our stories or shared information about the disease, others would have an easier time adjusting when they’re first diagnosed. I mean think about it: When you were first diagnosed, did you run to Google to find out how others coped?

Or at least that is my working theory!

Please visit these ITP sites for more information and inspiration for ways to get involved and spread the word:

And, as always, you can check out all of my posts tagged with ITP here. Or check out these specific posts:

So come on folks! Let’s get shouting about ITP!

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

Comments

I hope you are in good health. Reading your post brought a reminiscent smile. I was diagnosed in around 1989. I was 18. They suspected I had it for years a d I suspected it too as it explained the bleeding gums, the rashes and the aching pains around the joints I had for a loong time. I was scared stiff especially since my sister died of luekimia in 1985 and she was 18. Informations there was none. Computer was not a norm back then especially in Singapore. I did not get any treatment coz after how my sister suffered I was not going out that way. YOLO I was but not anymore. A fw years with scant information available I started treatments. Now I have stopped treatment for a couple of years because there are slightly more info available now and I going holistic.
I wish the best and pray a vary long remission for you :-)

by Hajira Ismail at 2:05pm (GMT) on September 5th, 2014

I found out I had ITP 8 years ago and going for a routine blood test and then being phoned by my Doctor and told to go to A and E immediately.  I had a platelet count of 6.  My immediate thought was I had Hodgkins disease - my Mother died of that when I was 24.  I was admitted to hospital and told after lots of tests that I have ITP. I had absolutely no idea of what that was.  My son went off and found some information on the internet and printed it out for me, but I still found it hard to take it all in and to understand.

In the 8 years I have had five episodes when my platelets are very low and I have had to take steroids and cope with the side effects.  I also have to take warfarin which complicates the whole thing.  I find the unpredictability of ITP one of the most difficult things to deal with and of course the tiredness and joint pains.

Friends often ask when I have discovered my platelets are low ‘what have you done’.  I find it hard to keep explaining that I haven’t done anything and no-one really understands why we get this illness.  I think it is really important to raise awareness and so was glad to see this blog.  I have held each year an I Tea P party to raise funds
and awareness and the next event is due to take place on the 13th September.

This is a lonely illness and it is so important that we reach out and support each other.

by ValerieHambelton at 9:42pm (GMT) on September 5th, 2014

my grandaughter was diagnosed with itp two years ago at the age of six.  she was covered in unexplained bruises, not the normal childish bumps but really dark ones that appeared after the slightest touch. she went to a & e when tiny purple rash-like dots appeared over her body which we thought could be meningitis. Both parent and child were questioned quite intensely about the bruises which is understandable.  itp was diagnosed and she was kept in hospital. i managed to find some information online which was a help, it was just the medical facts about the condition.  grandaughters platelets were either four or six which improved gradually over 6 months.  We think she has got over it now but its never far from our minds, any bruise or bump is watched carefully and there is always the fear that it will come back at some point or she might have blood trouble at some point.  We do try not to let it blight our lives and stay positive. No one knows about itp its a virtually unknown condition but apparantly the hospital said there had been four cases at that time, so that was quite surprising , statistically.

by hilary at 11:29pm (GMT) on September 5th, 2014

Thank you for your comments! Sorry for my delayed reply; life got in the way!

It’s interesting to hear others talk about fears of worse diagnoses than ITP - as well as questions of “how” bruises appear. It’s also interesting to hear how everyone deals with treatments differently.

I hope everyone is OK and that counts are improving!

Thanks again for your comments, and I’ll try not to take so long to reply next time!!
Frances

by Just Frances at 3:49pm (GMT) on September 8th, 2014

Hi, I was diagnosed with ITP just under 9 weeks ago, and have been admitted for emergency treatment in hospital 3 times so far. At the moment all the different treatment plans have not worked and it looks as though a splenectomy is the next option. I would love to hear from anyone who has ITP and can give me some advice or information. I feel very isolated, the one thing that is causing me a problem is the extreme tiredness but the doctors all tell me it’s not connected to the ITP. Any information or advice would be gratefully received :)

by Julie at 7:25pm (GMT) on September 8th, 2014

Hi, Julie. Thanks for getting in touch.

I am sorry to hear you’re struggling with ITP. It can certainly be a frightening time - and feelings of isolation are understandable.

I would encourage you to check out the links in the post above to read up more on the condition. I would also encourage you to really discuss things with your haematologist.

Personally, I have managed to not take medications for several years, despite a low count, but some doctors will argue to keep people on meds (especially prednisone). But if you can work with your doctor, there may be other solutions.

ALSO, there was a medical paper published a few months ago showing that some ITP patients do actually suffer from fatigue. It is not known why they do, but the evidence gathered over several years shows it is a possible complication. I will look for the paper and will share the link. DON’T let your doctor pass off your concerns about fatigue though. You MUST advocate for yourself. (Easier said than done, I know.)

There are great resources online through the links I mentioned above. Please also feel free to send me a message if you have any specific questions.

All my best to you!!
Frances

by Just Frances at 8:29pm (GMT) on September 8th, 2014

This is my ITP story. I was just diagnosed last month and am only getting around to recounting the experience now since I’m on steroids and am very foggy. I seem to have a very refractory case which is highly annoying.

My ITP Story- Or- That Time I Randomly Almost Bled to Death- Part 1 |
http://aimlesslastwords.com/2014/09/14/my-itp-story-or-that-time-i-almost-bled-to-death-part-one/

by Alyssa at 10:09am (GMT) on September 15th, 2014

Hi all,
I was diagnosed on July 8 last year with a count of 6. I found out after having a miscarriage and I knew something was wrong with me. I called a friend of mine who is a nurse and an hour and a half after an appointment with her, I had a phone call to say get to hospital. I said, “do I wait for an appointment or something”? She said no, go there right now, theres a haemotology team waiting for you. I knew something was up then!
I had what felt like a million blood tests (I really don’t like needles) and hours of waiting for someone to tell me what was wrong with me. I think that was the worst part. They gave me 80mg of prednisone at 12:30am (yeah good one!) and I started ivig at 3 am.
My counts went up and I went home, weaned of pred over 3 months and kept regular visits with good results. I stopped pred and stopped making my appointments because the docs told me I was going really well and my counts were over 250.  6 weeks later I had 2 bruises on my leg and my heart sank. 61. I refused treatment with my doctors support as I was told that often people with itp will just have a low count. They dropped steadily and 4 weeks later my doc put me back in hospital for more ivig and back on the damn steroids. This is when I turned to Facebook support pages and made the most amazing friends.
Went home with a count of 100 and it stayed at that for 2 weeks and suddenly dropped to 30, then 21 by the next day. My doctor told me that I was going to be one of his “special clients”. I love my doc to bits but all I wanted to be was. normal.
The next morning I had my first mabthera (rituxan) treatment of 4 and haven’t looked back. My last count was 274, it hasn’t been below 250 since January.
I’m very happy with the results but at the same time I’m so nervous as I have no idea how long it will last, though I am well aware to be grateful for every day I’m not checking for bruises.
I wish everyone the best of luck, its a challenging thing to fight but keep up the good work.

by Kellie Poppy at 10:26am (GMT) on September 15th, 2014

Thank you, Alyssa and Kellie, for sharing your stories! It’s interesting to see how differently the condition is for everyone.

It’s also great for others to see the different stories and outcomes so that they might find someone they can identify with, so hopefully someone will find a bit of solace in your words!

Frances

by Just Frances at 11:15am (GMT) on September 16th, 2014

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