Most popular ITP Books, Blogs and Articles for 2016

Feature image from HERE – (image of Home page on my computer – on desktop)

Top 5 most popular articles of 2016 from ITP and Me.  

  1. THE QUESTIONS YOUR FRIENDS ARE TOO SCARED TO ASK
  2. THE SEVEN STAGES OF ITP
  3. LIFE EXPECTANCY
  4. YOUR STORIES
  5. PREGNANCY and ITP
  6. A BEGINNERS GUIDE to ITP

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Patient Guide to ITP, Health Monitor

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Featured image from GUIDE2ITP

Did you know the people who created ITP PLATELET TRACKER for your smartphone also produce an ITP MAGAZINE?  Well, they do, and the latest edition is available now.  You can download the magazine for free or ask for a printed edition to be sent to your home.

It contains lots of information about treatment options, managing platelet counts and questions to ask your haematologist. There are also a few stories from ITP patients and helpful lifestyle tips.

Guide 2 ITP is produced by the company AMGEN who make the ITP treatment NPLATE (Romiplostim). This is why the magazine contains ads for Nplate as an ITP treatment.

Here is the INTERVIEW I did with Health Monitor in WINTER 2015.

 

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

31 Facts You Might Not Know About ITP

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  1. It is no longer called idiopathic.  The Idiopathic part of the name has been dropped.  It’s just Immune Thrombocytopenia now.
  2. So has the Purpura.  It’s gone too.  It’s just Immune Thrombocytopenia now.
  3. ITP is not always caused by an over active immune system as many people believe but a dysfunctional immune system in many cases.
  4. In some cases, ITP has been successfully cured with Vitamin D treatments – Article ( Case study from the Vitamin D Council)
  5. Your body actually may not be producing enough platelets.
  6. With ITP patients, the platelets you do have work really well.  This is because the platelets in your system are young – offering normal to advanced function – MediPubication – Platelet Function in ITP
  7. Having a low platelet count will effect your ability to have an epidural (be awake) during cesarian sections while delivering babies.
  8. You can get ITP from Rubella or ‘German Measles’
  9. Acute ITP can occur after any viral infection.
  10. People can donate just platelets with a plateletpheresis machine.
  11. ITP is an growing investment industry with Apheresis equipment market worth will be $2, 885, 000, 000 by 2020.
  12. ITP can lower your life expectancy by up to 20 years.
  13. Directly exposing a bruise to Vitamin D through sunshine will speed up the healing process.
  14. ITP is twice as likely to occur in women than men
  15. Having ITP will effect the validity of your travel insurance policy.
  16. Taking Immune Suppressants will effect the validity of your travel insurance policy.
  17. You can drink alcohol if you have ITP.
  18. Every year there is an international ITP Conference held in America by the PDSA.
  19. Australia has an International ITP Register for people newly diagnosed with ITP, which is used for research and information purposes.
  20. ITP was discovered by Dr. William Harrington in 1945, while caring for a young woman with ITP who died from haemorrhage.
  21. ITP can be caused by some childhood Vaccines.
  22. Having ITP does not effect your chances of getting pregnant or having a baby.
  23. ITP does effect your choices and decisions during the pregnancy and delivery of your child.
  24. 20 % of all ITP Patients have Secondary ITP as a result of another Disease or Autoimmune disorder.
  25. 5% of all pregnancies will develop Gestational Thrombocytopenia.
  26. ITP was one of the first Autoimmune disorders to ever be discovered.  It was one of the first discoveries of antibodies attacking the bodies own tissue.
  27. There is a free smart phone app that has been developed specifically for ITP Patients called ITP Tracker.
  28. ITP Awareness day is held on the 26th of September every year internationally.
  29. The Instagram Hashtag for people suffering from ITP id #itpawareness #platelets.
  30. You are able to choose your own treatment plan for ITP.
  31. You can decide which specialist you see about your ITP.

Smartphone Apps for Managing ITP

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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,

 

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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.

 

 

 

 

ITP in the News & Media

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ITP is not often in the Media – But when it is, we know about it.

Check out all the latest Newspaper and online articles about ITP here.

Also, we have made a nice list of famous people who have ITP too.

People with ITP, ITP stories, Living with ITP, ITP in the NewsHow a TREATMENT GAMBLE Paid Off, 17 Feb 2015

The story of one patient’s decision to use the chemotherapy Rixtuxin, even though it is not currently approved as an ITP treatment.  After a seven month battle with prednisone symptoms, side effect and withdrawal symptoms, the drug stopped working for Candace.  ‘After my platelet levels plummeted down to 14, my doctors and I had to change the course of treatment.’

Rixtuxin stories, itp stories, tip blogs, blogs about itp, blogs about platelet disorders

 

ITP patients, blood disorder, low platelet counts, ITP and People blogs about ITP, ITP blogs.Rare Autoimmune Condition gives TEEN A NEW OUTLOOK ON LIFE, 15 Feb 2015

Initially diagnosed with a platelet count of 4, Lynn was given what all suspected ITP patients are given as a first line treatment, steroids.  A story about how life changes for ITP patients who are still going to school, and how it does not all end up bad.  Read more about this ITP patients life at school…

Rixtuxin stories, itp stories, tip blogs, blogs about itp, blogs about platelet disorders

 

2014

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

Real Lives: I could bleed to death from just having a tooth out, July 2 2014

Angela, an occupational therapist for the forensic mental health service in Liverpool, is supporting a new campaign. Launched by The Haemophilia Society, the charity is encouraging everyone to get “Talking Red”, to make women more aware of the symptoms of a bleeding disorder.  Angela has a platelet Pool disorder, which is not technically not ITP but still in our circle of friends.  
 
people with itp, Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone, Azaria Allen
full article.

Help for Rare Disorder in US, July 3 2014

When Azaria was 2 she had many bruises on her legs, arms, spine and a black bruise on her cheek, Wendy says.  "She didn't remember getting any of them. Azaria was also tired and falling over a lot."  She had X-rays, CT scans, a bone marrow biopsy, and up to four blood tests a week, as well as emergency hospital visits.  "Azaria was diagnosed with ITP, which is not genetic and non-contagious," Wendy says.  "It is likely a virus caused her disorder."
We have featured an article on ITP and Me on Azaria's Story which you can find here.
ITp,
full article

Cross Keys boy has to stop sport as the slightest knock could kill him, June 19, 2014

JACK MCINTYRE used to love judo. But the boy of eight from Cross Keys can't take part in his favourite pastime any longer - a condition developed two years ago means a knock to his head or abdomen could prove fatal.
His father, Mr McIntyre is now raising money for the ITP Support Association and will be running the Cardiff Half Marathon in October.  Follow the link to donate here. 
 
ITP, blood disorder, Meredith prescott
full article

What's Your Number? One Number Could Cost You Your life, May 12 2014

Meredith Prescott, Master's candidate of Fordham University, has written an insightful article for the Huffington Post, outlining what it is like to live with ITP and how we can raise awareness and support. After a very successful event, raising over $45,000, I decided to plan my second 5k walk/run this June with another fighter, Linda McGuirl, to find a cure and help rid this world of ITP. Linda and I were both diagnosed at 21, and although we are decades apart in age, we both take strong pride in raising awareness and taking control of ITP. Riding the roller coaster in the world of ITP is so much better when you're not riding alone...Read More. 
 
will chambers, itp, famous people with itp, itp blood, immune thrombocytopenia, itp, Prednisone, autoimmune disorder, itp blog
full article

Will Chambers has been cleared of a potentially fatal blood disorder, June 15 2014

The Storm flyer has received the green light from doctors, two years after Melbourne were warned he could bleed to death if he was exposed to heavy contact at training.
The 26-year-old will become Queensland's 179th Origin player if Billy Slater or Greg Inglis withdraw from Game Two on Wednesday night. Peter Badel for the Daily Telegraph Sydney.  

     

Traveling with ITP, ITP and me
full article

Helena Woman does not let Auto Immune disorder keep her from traveling the world on her own, Oct 30 2013

In an article written by Peggy O'Neil for the Independent Record, Jamie Harwell speaks out about travelling the world with a platelet count of 30.
This year she will participate in the 31st annual El Tour de Tucson on November 23 where she will pedal 111 miles helping to raise money for ITP, idiopathic thrombocytopenia purpura, which she also has. 
   
famous people with itp
full article

Phegley thrives after battling blood disease, Aug 26 2012

Charlotte Knights catcher Josh Phegley overcame a serious illness, itp in 2010. Today, Phegley is helping the Knights prepare for the International League playoffs, which begin next week...One day early in the season, a ball was fouled off his thigh, leaving a dark purple bruise.  “Catchers get those kinds of nicks all the time,” Phegley said. “But I wondered about it because I don’t bruise easily.”  The next day, the bruise had spread around to the back of his leg, growing to about 9 inches in diameter.
 
full article

Rare blood disorder sidelines Chambers, Jun 7 2012

DESPITE feeling fantastic, Melbourne centre Will Chambers could have died from a rare blood-clotting disorder that has stalled his NRL career indefinitely.
Chambers will be sidelined until he recovers from the auto-immune disorder ITP (idiopathic thrombocytopenic purpura).  The only symptoms were some red dot rashes that appeared in the 24 hours after the Storm's win against the Warriors on Sunday.
   
full article

Australian Open 2013; Jamie Baker makes recovery, Jan 13 2013

After coming through qualifying, Baker wants to create his own fairytale here in Melbourne, and goodness knows he deserves a change of luck. So many of the difficulties he has experienced are connected to the horrific illness he contracted in March 2008, just as it seemed he was about to crack the top 200 for the first time.  Coming back from a tournament in Mexico, Baker found that bruises were appearing all over his body for no apparent reason. Then, when he visited a hospital in Florida, he was diagnosed with ITP.
   

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full article

Actress Lisa Blount dead at 53 from blood disorder ITP, Oct 10 2010

Actress Lisa Blount dead at 53 from blood disorder ITP
 isa Blount, who co-starred in the 1982 drama An Officer and a Gentleman, died Oct. 25, 2010 at the age of 53 after battling the blood disorder Idiopathic Thrombocytopenic Purpura (ITP).
Not too sure what is happening in this article as the reporter likens ITP to the neurological illness like MS?  'Sources say the actress had complained of chronic back and neck pains, and her mother told police Blount had battled ITP, a neurological illness similar to multiple sclerosis for 17 years.'