The Beginners Guide to ITP; What to Do After You Are Diagnosed

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Feature image by CLAUDIABRUNO

ITP or immune thrombocytopenia is classified as an autoimmune disorder.  This is because it is the immune system that targets and destroys your platelets in your blood.  ITP is diagnosed by a low platelet count after the exclusion of all other causes for this deficiency.

So you have just been diagnosed with ITP.  Firstly, welcome and don’t worry.  Having ITP is not going to ruin your life.  This article is going to walk you through the first steps you should take after your diagnosis.

It will be easy and you can learn from our mistakes.

1. Start Tracking Your Platelet Count Now

Keeping a close eye on the rise and fall of your platelet count is key to removing a lot of the FEAR and worry from ITP.  Over a long period of time, patterns will begin to emerge and you will start to connect platelet drops with other environmental factors. 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

There is More Than One ITP Convention? It’s True!

UK itp, UK 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,The ITP National Convention 2015

Held in the UK and presented by the ITP Support Association UK, the ITP NATIONAL CONVENTION was held on Saturday the 11th of April in Lancs, 2015.  Yes, sadly you probably missed it.

The great news is that the PRESENTATIONS from the convention are available online to check out.  Katie from Me Myself and ITP was there to give us the LOW DOWN on the Convention and share her insights from the day.

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The ITP Conference 2015

Held in the America, the Platelet Disorder Support Association’s ITP CONFERENCE will be from the 24th to the 26th of July in Nashville Tennessee.  The THREE DAY PROGRAM has already been finalised and is available on the Platelet Disorder Support Association website.

The program features renowned ITP authors, researchers and clinicians, all with a strong interest in helping ITP patients improve their health.  In addition to the educational programs and social events, there will be a programs for children and teens ages 5 and up.

The N Plate Article

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Feature image from BARNORAMA

I have put off writing about N Plate for a while.  N Plate is still considered relatively new among ITP treatments and many patients who have taken N Plate have yet to experience the long term consequences.  I was also concerned that the only place online where I could find any information about N Plate was directly from the N Plate website.

N Plate is the brand by which the drug ROMIPLOSTIM is known. Approved by the American FDA on the 22nd of August 2008, N Plate was FIRST REGISTERED on the Australian Registry of Therapeutic Goods on the 8th August 2008.  N Plate is a listed drug on the Australian PBS. Continue reading

Oil Pulling with Peppermint Hearts

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Firstly, let me be very clear… I got this idea from PINTEREST. The place where all great ideas go to die and then be reborn into a meme.

I first started oil pulling as an alternative to brushing my teeth when my platelets were low.  I liked the idea of it, and the feeling in my mouth after I was finished, but the routine never seemed to stick.  I would always do it for a few days and then stop brushing or pulling altogether.  Yes, I am gross.

Anyway, when I came across this cute idea, I had to try it.  I decided to add peppermint oil for a minty fresh finish.

itp alternative therapy, itp oil pulling, itp bleeding gums, itp bleeding mouth, itp life style, itp help, meg brewster, itp meghan brewster1.  The Coconut Oil

Leave the oil in the jar.  Gently warm the small jar of Organic unrefined Coconut Oil until the oil is clear, runny and fluid.  You can do this by leaving the open jar to rest in boiling water till it turns to liquid.

 


itp alternative therapy, itp oil pulling, itp bleeding gums, itp bleeding mouth, itp life style, itp help, meg brewster, itp meghan brewster2. The Peppermint

Add a few drops of Organic Peppermint Essential oil to the melted Coconut oil and stir well.  For 300mls of coconut oil, you want to add about 10 drops of oil so it’s nice and minty.

 

itp alternative therapy, itp oil pulling, itp bleeding gums, itp bleeding mouth, itp life style, itp help, meg brewster, itp meghan brewster3.  The Hearts

Once the peppermint oil is mixed through, pour the oil mix out into small moulds.   Chocolate moulds or ice cube trays should be perfect.  Most people start oil pulling with way too much oil, which is hard to hold in your mouth.  Start with a teaspoon per heart and then add to that as you get used to the sensation.  Place them in the fridge to cool and harden. (The freezer cools the oil too fast and makes them weird)

itp alternative therapy, itp oil pulling, itp bleeding gums, itp bleeding mouth, itp life style, itp help, meg brewster, itp meghan brewster4. The Storage

Once the oil has turned white and hard, store the small oil pulling chews in the fridge so they keep their shape.  The colder they are, the better they taste in the morning on an empty stomach.

And it works.  I have a little jar of them in the fridge that I use while I turn the coffee machine on and start grinding beans.

 

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

The low down from the ITP Support Association Convention!

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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 guest post from KATIE MELOY 

from MEMYSELFANDITP

Today I attended the 20th Anniversary and convention of the ‘ITP Support Association’. I was very eager to attend after very recently being diagnosed with the condition. I’m pleased to say that I was not disappointed and would urge anyone looking for support, help or information to attend.

The convention catered information in all aspects of ITP: from pregnancy, childhood and adult ITP and also different severity’s (acute, persistent and chronic ITP). It was a very laid back open atmosphere where every question, opinion and experience was valued. Continue reading