Four Years of ITP & Me

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Feature image from STUDENTSWIFE

It’s time to celebrate 4 years of ITP & Me.

A year ago today, I wrote a blog post about THREE YEARS of ITP & Me.  At the time, my hopes for the future were that I would be able to have kids with my ITP and write about the whole process.

That dream has now come true, as I am sure all heard. Our son was born just a few weeks ago with a wonderful platelet count and not a sign of my antibodies staying in his system.

Now my hopes for the future are to change the perception of ITP around pregnancy and birth.  During my pregnancy, it became clear that there is a strong culture if fear around ITP and pregnancy.

I’m now working on a new book this year which should be out in September 2017.

I’m so grateful to all the EMAILS and messages received through itp.and.me.g@gmail.com and via the comments on the website.  Now more than 10 000 people come to ITP & Me a month looking for information, help, advice and tips for living with ITP.

Thank you to everyone who has SHARED THEIR STORY with us here.

Cheers, Meg

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

The First Trimester of an ITP Pregnancy

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Feature image from BABYCARLOTA

We are having an ITP baby!  I am currently 15 weeks.

The first trimester was pretty full on and things are only now starting to feel normal again.  It has been an insanely busy, stressful and at the same time slow 3 months.  We have already seen the baby three times on the ultrasounds.

I am still nervous just writing it down.  Everytime we go into the doctors, there is a little hesitation, doctors always cautioned us about the risks, to not get too carried away.  They smile, but they are always clear that this will be a long pregnancy and to not burn up all our energy in the first few weeks.  We will need a long game with this one.

Here’s a run down on what our first trimester with an ITP pregnancy looked like.

APS pregnancy, Hughes Syndrome Pregnancy, ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancyDoctors – We went to the doctor as soon as we found out we might be pregnant, which was 3 weeks.  It was as early as possible.  Our doctor was surprised the home pregnancy test even came back positive. 

Home pregnancy tests are getting more and more accurate, but they are not all the same.  On the back of the test, you can read how accurate they are.  Some of the tests are able to give you a positive three weeks earlier than others.  Don’t believe anyone who tells you they are all the same.   Continue reading

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