Top 5 most popular articles of 2016 from ITP and Me.
- THE QUESTIONS YOUR FRIENDS ARE TOO SCARED TO ASK
- THE SEVEN STAGES OF ITP
- LIFE EXPECTANCY
- YOUR STORIES
- PREGNANCY and ITP
- A BEGINNERS GUIDE to ITP
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.
A guest post from KATIE MELOY
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 →
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.
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…
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,
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.
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 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.
How 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.’
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…
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.'