ITP Awareness Day Cup Cakes

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp, ITP Awareness Day

As you already know, tomorrow is International ITP Awareness Day!

Yay for the 26th of September.

Earlier today (While I was searching for a spleen shaped pinata on Pinterest – Which I will have to make myself, as it does not exist) I found this amazing idea from the International Red Cross Website.  Inspired by the cup cakes that were made for blood donors, I decided to put an ITP spin on them by adding a few small white platelets to the decorations.

The actual cup cakes here are irrelevant.  You can use any kind of cup cake recipe or flavour that you like – really these are all about the decorations on top.  I used a vanilla cake with vanilla icing so that I could colour it red easily.

ITP Awareness Day, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itpThe Red Blood Cells

1. Roll Out the Soft Icing – If you can’t buy ready-mixed red icing from the supermarket or grocery store, you can still use white icing, just be aware that you will be mixing white with red and the icing tends to go pink – not the nice dark red you hoped for.  Mine are a bit pinker than I wanted but I ran out of red food dye.

2. Cut Small Circles – Keep your red blood cells nice and small.  If you don’t have a icing tool small enough, try the lid of a small bottle or the smaller opening of a funnel. Continue reading

Smartphone Apps for Managing ITP

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,

There are a lot of apps available at the moment for both Iphone OS and Android.  As of June 2014, there were one and a half million apps available for download to your smartphone.  It is no wonder that there is an app for everything.

Below are my favourites for managing and living with ITP.

 

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.   Famous people with itp, celebrities with itp, low platelet count, Apps for ITPITP Tracker

Free

The ITP tracker was developed by the people at Health Monitor Network.  It is aimed at being a complete Platelet Disorder Resource.  It is designed by people who know what you need.

There is a place to record your platelet count, which automatically graphs the data making it easy to read; a calendar for treatments and appointments; as well as a place for symptoms, moods and side effects.  I have only just found it, wish I had it from the first day, I could have kept all my records together…

 

apps for ITP, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.   Famous people with itp, celebrities with itp, low platelet count,BloodFeud

Free 

Bloodfued is a game. A funny and informative game.  This game is hilarious and yet very educational.  I found it hard, at first to get my red blood cell moving, as I’m not a computer game person, but I must admit I might be addicted.  I have been playing it all afternoon and still haven’t moved on to the next level.  I’m not even sure there is a next level.

This game is designed for children, obviously, providing a much needed visual resource for understanding platelet disorders.  The game is centred around a red blood cell shooting platelets with protective IVIG before the immune system destroys them.  There are three settings – Leukaemia – ITP – Sickle Cell Anemia.  A great way to spend your time, waiting for IVIG infusions,

 

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,

ICE Emergency Medical Info

Free

There are a lot of Emergency Medical Apps in store to choose from.  They range in price and functionality.  Some cost money to download while others are free.  I think they are all fine, it just depends on which one you like.  I use I.C.E Emergency Medical info.

The important thing to look for is that the Medical alert information is accessible after the screen has been locked.  there is no point in having all that information if nobody can access it.

Itp on Pinterest, ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp. Famous people with itp, celebrities with itp, low platelet count,Pinterest

Free

Pinterest probably seems like an unlikely addition to this list, but hear me out.  My sister actually drew my attention to a number of pin boards dedicated to rare autoimmune disorders.  When I started to investigate, there were a lot of people on Pinterest talking about ITP.

A simple ‘ITP’ search on Pinterest will bring up loads of Pin Boards and Accounts from people sharing photos, articles, blogs, websites and event information on ITP; all from Pinterest.  You will need a pinterest account to log in to the app.

 

 

 

 

Azaria

Azaria-Smallimage

 

Autoimmune Low-Blood-Platelet Disorder

A Mother’s Perspective

Diagnosis

In early 2013, we noticed our two year old, Azaria, had a lot of bruises on her legs and arms.  She also had bruising on her spine and had a black bruise on her cheek, which she didn’t remember getting.  She was tired and falling over a lot. We took her to the doctor and asked for a complete blood count. Her platelets were very low at 19,000 per ml.

That was the start of her journey through the hospital system, including many blood tests (up to four times per week initially), x-rays, CT scans, emergency trips in an ambulance and a bone marrow biopsy until finally she was diagnosed with Immune Thrombocytopenia.

What Caused This?

ITP is not genetic and not contagious; it is likely that a virus caused her disorder (although we cannot know the cause for certain). ITP occurs when, due to a defect in the immune system, antibodies attach to platelets because parts of the platelets look like a virus or bacteria the body is fighting1. Where ITP occurs in children, 50% recover in 3-4 weeks, 75% in 6 months and 90% within 12 months. Chronic ITP is arbitrarily defined as thrombocytopenia that persists for 6 months or more2. Azaria’s ITP is considered chronic, as it is over 18 months since the diagnosis, and may continue into adulthood. Azaria’s blood platelets fluctuate but are often under 20,000 per ml of blood.

Sleep / Fatigue

Azaria gets tired and fatigued and sometimes falls asleep at the dinner table with her head in her food. She has had light sensitivity and pain all over her body for over 18 months, and – when the symptoms are at their worst – even stroking her hair hurts her.  We don’t know if the pain in her body and light sensitivity is caused by ITP or not, so doctors are continuing to do tests to see if they can find the cause of her pain. Sometimes Azaria has a sore mouth and doesn’t want to eat or drink; she also says she’s too tired to eat and says eating makes her tired.  She also has issues with her bowel.  Although she doesn’t always look sick, it doesn’t mean she isn’t. Continue reading