Paulien Barkmeyer

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Welcome to Paulien's Story

Hi! My name is Paulien Barkmeyer and I am LIVING with ITP! The operative word being LIVING!

Much like you, I have been on a tremendous journey of highs, lows, ups, downs and insides outs finding a way to come to terms with this condition and after approx. 7 years I have finally come to the point of “living with” rather than “a battle against” ITP.  My numbers continue to be pretty crappy, my energy levels wane and all the other bits and pieces that go along with our condition.  I’ve finally given up my dream of being a Roller Derby Queen!

My health and health habits are probably the best they have ever been.  My life is filled with joy and joyful activities.

As you are well aware, your life can become consumed with treatment regimes, blood numbers and endless prodding and pricking from various health professionals.  Searching for a “cure” can get you down and depressed However, only in the last years or so have I reframed my view of this situation.  

I figure there are plenty of things I have no influence or control over so I made a decision to focus my energy and attention to the things I can influence.  I’m certainly not putting on my “rose coloured glasses”, just looking at my life and condition differently!  Currently, there is no changing the fact that I LIVE with ITP and try as I might, it may never go away.

I liken my shift in perspective a little like getting caught in a rip and “going with it” rather than to expend all my energy fighting against it.  I’m just “riding the wave” baby!

Some of the more practical habits I have put into place include: Continue reading

Tammy Farrow

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Welcome to Tammy's Story

My name is Tammy Farrow.  I am 32 and live in a small village near Bath, England. I married John, my partner of 10 years in July 2012 and we have 3 children, Johnnie, Marylou and Blossom. I am a stay at home mum, spending my days looking after the children and keeping the house organised (sort of).

I am a self-taught hand lettering artist and illustrator, and have just opened an ONLINE STORE to sell my creations – this is something I really enjoy and spend as much time doing as I can – I have found it especially therapeutic since I have been ill. Continue reading

Bron

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Welcome to Bron's ITP Story

 A little bit about me…

I was diagnosed with ITP in early 1998 at aged 27. I had been having extremely heavy and long up to 22 day periods and felt really flat.  I thought I was anaemic so went to Docs for some bloods at 10.00 am and went home. By 12.00 pm, my mother and doctor both had started banging on the door of my flat telling me I had to go to hospital as soon as possible. I had a platelet count less than 1000. Hmm, okay, freak me out folks. When I arrived, there had been a horrific accident on the highway with 5 people killed and a couple of kids needing air lifting. So I was put on a bed to the side, told they had to check but it could be leukemia and left me for 6 hours. A very anxious night indeed thinking I was going to die pretty terrified to say the least.

The next morning, after all the drama they got to examine me and noticed all the PETACHIAE (I get dry skin so had put the dots down to that), then of course inside the mouth and then my nose started to bleed. I had lived the previous year in the UK and had a really bad dose of the flu that they think may have triggered it. So they did a bone marrow biopsy from my chest (the single most painful thing I have ever experienced), they told me I had this thing called ITP, put me on 150mg of PREDNISONE per day (I am a big girl hence a high dose ) and sent me home after 3 days. Continue reading

How to Heal A Bruise, An ITP Book

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For Patients and Parents living with ITP,

how to heal a bruise, 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, A Book

There is so much information available about the medical problems of immune thrombocytopenia.  Written by doctors and professionals, it’s difficult to read and even harder to decipher. Medical journals and scientific papers never address the questions you actually want answers to – What is it like to live with ITP?  How can I still live my life?  What will it feel like now that I have ITP?

HOW TO HEAL A BRUISE was inspired by Meghan Brewster’s most popular ITP articles.

 HOW TO HEAL A BRUISE includes stories from Meghan’s ITP Journey, some of the latest ITP research and advice for living a life with ITP.  This book is comprehensive yet easy read; from a person who actually has ITP.

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About the Author, Meghan Brewster

meghan brewster, author, how to heal a bruise, itp blood disorderMeg was diagnosed with immune thrombocytopenia when she was 22 years old.  She struggled to read dense medical journals and scholarly articles to learn more about her ITP.  What was missing from the ITP conversation was information from other patients, about what immune thrombocytopenia was really like.  

In 2012, Meg set up ITPANDME.  Three years later, it’s one of the largest ITP blogs in the world.  Meg has been writing about ITP for more than 6 years, has heard hundreds of patient stories and answered many questions about ITP life from patients and parents.

HOW TO HEAL A BRUISE is an honest account of her journey with ITP, as well as practical advice for living with ITP and information from some of her most popular articles.

This book takes you through the stages of ITP from coming to terms with your diagnosis to finally accepting and thriving with ITP, what to expect while living with ITP and how to make sure it doesn’t take over your life.  An honest and informative account of living with an autoimmune disease.

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Praise for How to Heal a Bruise

The book includes lots of ITP information such as, the science, history, tips and guides, alongside strong emotional support. It is now my own ITP Bible! I could not recommend it more highly! FULL REVIEW HERE from Katie Meloy

Beyond being a book documenting scientific and medical information, is the personal experience of Megan Brewster after seven years of living with this blood disorder and is enriched in fourteen chapters…I didn’t know what to expect on How To Heal A Bruise, then simply I couldn’t stop reading.  FULL REVIEW HERE from Laura

‘My partner and I absolutely love your blog and find many of your post’s to be just what we are looking for.’ Andy USA

‘Thank you for your thoughts…they’ve helped me with finding perspective in our reality.’ Jenny Australia

‘Love the way you write.  Meg, you made me chuckle.’ Bron Australia

‘Thank you for writing this, it will surely help the newbies.’ Padma, India

Features

  • The History of Immune Thrombocytopenia.
  • Practical Diet and Lifestyle advice.
  • Pregnancy and Babies with ITP
  • Advice on Natural Therapies and alternative medicine.
  • Possible Isolation and Depression from an ITP diagnosis.
  • Covering up Bruises, tips for healing and hiding bruises.
  • First aid tips and tricks for around the home.
  • ITP fears and how to overcome them.
  • A Huge list of References – Meg’s favourite blogs, books and ITP Resources.

Mizzie

People with itp, famous people with itp, living with itp, celebrities with itp.

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Welcome to Mizzie's Story

We like to ask all sorts of questions here, from the diagnosis story, to how patients with ITP sleep.  How they deal with stress and how they feel when their platelets are falling, appetite, mood and how their life has changed since ITP – Funniest or worst injury and how they manage ‘being sick’…  Every ITP story is different.  Enjoy.

A little bit about Mizzie…

I’m an Australian citizen and currently employed in the defence force, I exercise on a daily basis and I spend my free time raising two beautiful kids with my beautiful wife.

How were you diagnosed…

It was August 8th 2014.  My career was thriving.  Everything I ever wanted was coming my way. I decided to take my family out to dinner 2 days prior to going out on a field exercise with the Army that lasted 5 days. We went to Sizzler’s and everything seemed normal apart from gastro going through the family.

I had a vegetarian dinner were I had some off tasting mushrooms and didn’t think much of it. I woke up the next day feeling as if I was hungover but carried on with normal business. Over the coming days, I started becoming constipated and having bad tummy pains. This stage was just a constant 3/10 pain. ( I compare to be hit by a car as I was when i was younger). Day 3 of the field exercise I became really constipated so I had milk to help with my bowels, within 10 minutes I was in the toilet, I had projectile diarrhea and 10/10 pains in my gut as if someone ripped a hole in my belly. I had this episode and later that night I went to bed and was in constant pain. Continue reading

Jamee-Lee

A little bit about me

My name is Jaymee-Lee, I am from Victoria, Australia and am 16 years old.  I wanted share my story with you so that other kids my age and also anyone else that wants to read it can. Ok, so here it is…

I was diagnosed with this stupid blood disorder when I was 13 years old. I was in year 7 when all this shit started. So, one day I realised a weird rash on my body and to be honest I thought my mum had started using new washing powder and I was having a reaction from it. I later found out that she didn’t even start using new washing powder (oops!) This rash didn’t look aggressive or anything. It just looked like little red dots and they were mainly found in clusters where my clothing was tight. I had this rash on and off for a few weeks and because it kept going away I just forgot about it. Then one day, I started to break out in bruises as well.

My mum decided to take me to the doctors to get the rash and bruises checked out. The doctor thought it was nothing, but told me to get a blood test anyway. 2 o’clock the next morning we got a phone call from my GP telling us that I need to go to the hospital immediately as my platelet count was only 4,000. The doctor’s main worry was that he was hoping my white blood cell count hadn’t dropped as well because you know what that could mean. Of course, by this point I was completely shit scared and not even sure if it was even happening or just a dream since I had been woken up so early.

When we got to the hospital I had another blood test which showed my platelets had now dropped to 2,000, but thankfully my white blood cell count was fine.

I think the weirdest part about this all was that I felt completely normal. The fact that I had no idea that I had had this problem or even how long I had had it for was crazy. The doctors prescribed me with prednisolone which made me put on weight, which of course is a girls worst nightmare. I hate prednisolone. For about 3-4 months the doctor would increase my dose, which would make my platelets around 30,000, but as soon as my dosage was decreased my platelets would also drop.

When the doctor finally realised that the prednisolone was useless, he decided that treating me with Immunoglobulin infusions would be the next best idea. These weekly infusions had the same effect as the prednisolone- my platelets would rise for a day and then drop back down again. This treatment was also useless.

I was then having rituximab infusions. After 4 weekly doses of rituximab my platelets had shot up to around 150,000 which is where they were meant to be. Ever since then my platelets have remained in the normal range. I have been in remission for just over a year and a half now and hopefully for much longer.

Also, my mum had been diagnosed with ITP when she was 16 years old and ended up having a splenectomy as that was the last resort for her back then. But the thing is ITP is not known to be hereditary, so maybe it actually is!

I think the worst thing about having ITP is that it is an invisible disorder (even I didn’t know I had it) and none of the kids my age could understand it, which really sucked. Trying to explain to them why I couldn’t play sport with the rest of my class or why I had to quit basketball or why I had to take lots of medication or have lots of days of school  was really hard because no one really understood. That’s why I want to share my story for the young teenagers out there that are going through or went through the same thing as me because I actually do know what they’re talking about.