ITP, The Questions Your Friends are Too Scared to Ask?

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Feature image from WEHEARIT (Apologies for the terrible spelling)

I know the feeling.  A good friend is sick and I want to be there for them.  I’m interested in their problems but their condition doesn’t quite make sense to me.  I’m not sure how to ask the right questions without offending them.  So instead I don’t ask.  I pretend I understand, nod my head and try to say positive things.  But all the while I’m thinking, it doesn’t sound too bad.  

Well, my friends were brave enough to ask the questions your friend might be holding back.  Here is one of our most honest conversations about ITP and how it affects patient lives.  It is also a wonderful insight into how others perceive ITP.  The answers to 12 questions your friends might be too scared to ask.

Q. Is ITP the same thing or similar to the disease that the heir to the Russian throne who was killed by the Bolsheviks, Alexei Nikolaevich, had? I think he had haemophilia? 

A. ITP is kind of similar to haemophilia, but at the same time very different.  While haemophilia is a hereditary disease, ITP is an autoimmune disorder.  Haemophilia is quite rare and will most likely affect men as it is associated with the Y chromosome. ITP is more prevalent in women. 

More people have ITP and it is overall more responsive to treatments, making ITP an easier disorder to live with day to day – but still just as dangerous in emergencies and accidents.  

Q. I understand that ITP has something to do with bruising. Bruising doesn’t seem that bad. I bruise every time I bang my shin against the coffee table. What’s the big deal? Continue reading

We’re taking a little break

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So it’s time for us to take a little break.

ITP Awareness day and launching HOW TO HEAL A BRUISE really took it out of us.

Things are getting very crazy here in Australia as we prepare to move house, organise doctors appointments, travel to baby ultrasounds and head up the coast for a very lovely couple’s wedding.

We’ll still be answering emails and popping up on social media but for now, ITP & Me will be back at the end of November.  See you then!

ITP Awareness Day Coming Soon…

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September is ITP Awareness Month.  And the last Friday of the month is Sport Purple for Platelets Day.  This year it’s on the 25th of September.  Yay!

To celebrate ITP AWARENESS DAY, ITP & Me will be launching HOW TO HEAL A BRUISE, an ebook about living with ITP.  Read all about it HERE

Here it is…

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HOW TO HEAL A BRUISE is currently available for preorder through AMAZON.

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Your Guide to ITP on Twitter

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Feature image from TWITTER

It is no surprise that ITP has made it onto Twitter.  There are a number of different people and organisations tweeting and sharing articles on ITP via #itpawareness #itp #itpproblems and #raredisease.  Here are a few people to follow, below

PDSA ITP SUPPORT


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@PDSA_ITP
Platelet Disorder Support Association – the premier source for information, treatments, and support for people with ITP, Immune Thrombocytopenia.

 

ITP SUPPORT ASSOC

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UK Charity supporting sufferers of the autoimmune bleeding disorder Immune Thrombocytopenia.

RARECANDACE

twitter itp, low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorder@RareCandace

Disrupting the  space with Immune Thrombocytopenia (ITP).  FL Director @RareDiseaseUntd


 

ITP PROBS

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@ITP_Probs
ITP is a rare autoimmune blood disorder resulting in low platelets, I hope this page gets the word out and connects everyone through the struggle of ITP.

 

LYNETTE SHELTON

itp on twitter@killeygirl

Mum of Twins, adventurous, philanthropist, woman of many talents, ITP Patient (lack of Platelets) 12 years and still fighting to survive.

 

 

 

Are you Trying to Roast Your Own Beans?

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Feature image from LISSYELLE

There is a café down the road from my house that has always had a juicer.  Today I’m writing from inside that very café.  Recently they have got themselves a coffee bean roaster.  It smells amazing.

It smelt just like my oven in Mexico when, for a brief moment, I experimented with DIY coffee bean roasting.  It was a wonderful smell before all the coffee beans inside the oven caught on fire and filled my host family’s house with smoke.

I know nothing about roasting coffee but I thought, ‘Hey, how hard can it be?’  So I googled a youtube video and away I went.  I’m not a professional coffee maker, I had no clue what I was doing.  It was disgusting, but I did it anyway, because I could.

The Destructive D.I.Y.

It’s tempting to try and do everything yourself, to do things you have no idea how to do.  DIY is everywhere at the moment, people encouraging you to do it all yourselves, to build your own tables, mud brick your own homes, bake your own bread, grown your own veggies, brew your own beer, make your own clothes, keep your own honey bees and ferment your own kombucha. Continue reading

An Interview with Miss Plaquetas (Miss Platelets)

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Feature image from MISSPLAQUETAS

Laura Cisneros is an ITP patient living with Fybromyalgia and Chronic Fatigue Syndrome in Mexico City.  Online she blogs as Miss Plaquetas, writing a bilingual blog about chronic illness and cooking delicious food.  I first saw Miss Plaquetas on Instagram when she was sharing images of bruises under the hashtag #platelets.  Lately we have been chatting.

I’ve lived with ITP for the past three years now.  March the 1st of 2012 I had a fall that wasn’t even tough, but that caused a huge black bruise on my leg.

It was her friends, family and bosses at work that noticed Laura’s symptoms.  Her family were concerned; especially as she looked very worn and felt she was under a lot of stress.

By then I already had symptoms of the disease, although I didn’t know it was ITP.  I ignored these signals which I believed were caused by the stress to which I was subjected.  I traveled a lot for my job and was addicted to my work.

At the time Laura was working in Industrial Engineering specialising in Hygiene and Industrial Safety which saw her constantly traveling.

I always put my job as my priority and on weekends I was partying a lot, so it was natural for me to assume that my body was already getting tired. Sometimes I would get a message the night before that I had to go on a trip,and I should be ready for at least, fifteen days of absence.  I never thought it was something else.

Laura was eventually sent to the ER with a count of 12, not understanding what was happening and not sure how to explain anything to her parents.

Three years may not sound very long, but I’ve been subjected to a myriad of treatment with immunosuppressants, steroids, alkali, intravenous, oral, mixtures…Two splenectomies, one of the spleen and one in accessory spleen and tumours.

Laura’s longest stay in hospital so far has been two months.  Her doctors have tried all possible treatments and none have worked successfully.  The journey has taking quite a toll; mentally, personally and spiritually.  There have been exhausting times when Laura even considered simply giving up.

Due to constant fatigue, eventually I got more diagnosis of fibromyalgia and CFS, which coincided with my chronic ITP diagnosis in November 2014.  It took two years that a rheumatologist diagnosed me with fibromyalgia and CFS.

Continue reading