ITP and Friendship

low Platelets, ITP disease, immune system disease, living with itp

It begun like this… Step back in time 6 years. I was away with friends for the weekend and was out partying at the time, when I got a call. I was sitting in the back of a car, passing champagne around and drinking from the bottle.

“I’m sick”, Meg said, as matter of fact as always.

“Oh, that’s no good,” I said, not registering the magnitude or chronic nature of the initials ITP. The long words meant nothing to me and I figured my friend would be fine soon. I still regret my callous reaction that equalled something to the significance of a cold.

Now step back again, before that call, and I remember when I first thought something was wrong. I lived with Meg in a house of girls. We would often make quick dashes to the shower in little more than our underwear. One day I looked at Meg as she walked by and I saw an incredible amount of dark bruises on her body. What struck me the most was that they were not in the normal places. Instead of bruises on her knees and shins, she had bruises on the inside of her thighs and highlighted against the porcelain white skin underneath her forearm. We discussed these bruises and figured they were nothing. Perhaps she needed to take iron tablets. Continue reading

Brushing Your Teeth with ITP

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Feature Image from Dorisferres.com

A little while ago I posted a comment about how much I disliked brushing my teeth when my platelets were low.  A few people replied that they also had problems with brushing their teeth and bleeding gums.  The problem with this is that you might actually get Gum Disease as a consequence Below is a more detailed post regarding what low-platelet-oral-hygiene options there are.

Did you know that dentists are often the ones to diagnose ITP in their patients?  Dentists are known to recommend their patients to seek a consultation with their GP if they notice any abnormal bleeding without the presence of gum disease.  In this way, as many people can ignore bleeding gums, they might be the first ones to notice anything abnormal.

There are a number of reasons why your gums may bleed when you brush your teeth.  You might have ITP or you may have the beginnings of gum disease.  Your gums shouldn’t bleed when you brush your teeth.  For someone with a bleeding disorder, often the first place to bleed is the mouth and gums.  I know that the first place I notice a really low count is in the bathroom sink at about 10.30 pm.

The problem with this scenario is that I can’t always assume that my gums are bleeding because I have ITP – I might very well have gum disease as well.  This is were the confusion comes in.  People with ITP can still get gum disease and it is important to not just assume that a bit of blood in your spit as you brush your teeth is from a low platelet count.  Am I making any sense?

When I have a low platelet count, I notice my gums bleed more.  I dislike the taste of blood.  I think it tastes like metal or electricity in my mouth.  For me it is one of the worst sensations.  Therefore, I will usually avoid brushing my teeth so I don’t have to taste it.  This is a problem because I am now more likely to get another gum related, gross hygiene issue in my mouth. …and the bleeding goes on.

So what can you do to make sure your gums are always healthy and treated properly? Continue reading

Kinesiology – Your Body Knows Best…

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Guest Post by Amber Glajz from Dealing and Healing

Last week I went to my first kinesiology session with my sister-in-law’s sister, Erin from Achieving Balance. It’s taken me a week to process the whole experience and to also do some further research about it as a healing practice.

Kinesiology is a healing technique that tests your muscles that represent different parts of your body to essentially listen to what the body itself says it needs healing with. I was asked what my goal was for the session and I said that I was generally feeling confused about my health, that I felt like I had lost touch with my own instinct as to knowing what was right for me. So we put this sentiment into words so that my goal was written something like “to feel confident and stable about the decisions made regarding my health, especially on my own terms”. This profoundly resonated within me because I currently have so many doctors now that my dependence on their advice has become crucial, even though sometimes it conflicts with what I believe, or what other doctors that I trust have said. Sometimes having too much information can be a shit fight! And to no surprise, this issue with my doctors also came up this week!

Anyway, back to my first official kinesiology session – I was asked how my body’s response mechanisms work by holding up my arm and relaxing at the joints. She asks my body to show my “yes” and “no” responses by asking me to push against her finger – and seriously, there are times where I can not hold myself up against the touch of her finger! And it’s not like she is battling me with it, she is gently touching me, but my body is responding to her questions about my feelings, about my treatments and about my life experiences by either positively or negatively working against her touch. I did ask her whether my body could trick myself into responding a certain way, for example, I want my response to be something, thus, will my body adjust to match that response? But no, it didn’t work that way.

Continue reading

My Tips to Not Looking like a Junkie

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

Feature image from Lissy Laricchia

So, you have ITP now – Welcome.  What you might not know, is that every now and again you may find that you look a lot like a junkie.  (Unless you are a junkie and then you’ll probably find yourself pissed at me for writing this article).  The distinction between Junkie and ITP patient is pretty dam small.   I don’t have anything against junkies.  They have always got funny stories for me and have brightened the character cast of Orange is the New Black for three great seasons now… I digress.  Looking like a junkie is just another fact of ITP that doctors fail to mention.

Reasons you might look like a junkie are as follows – Track marks – Tired eyes –  Mood swings – Late nights – Nausea – Thin, Fragile Skin – Hallucinations – Liver Damage – Confusion and finally, Paranoia.  Ok, I can’t help with the paranoia.  I find, most of the time when people think everyone is out to get them, it is normally true.  But for the rest of it, there is hope..

Continue reading

It’s Time to Say Thanks

- ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

I just read a quote online that says ‘The only thing tough enough to beat you – is yourself’.  It was referring to the fact that with ITP and all autoimmune disorders; it is in fact our own bodies that are the problem.  It was a funny quote – but I really don’t think it is a constructive way to look at things.  I don’t think our bodies are trying to hurt us.  I don’t think our bodies are trying to make life difficult.

I genuinely believe that our bodies are trying to do what they think is best.  Our immune systems have just been a little bit misguided, but at least they haven’t given up on us all together.  Take your autoimmune disorder as a blessing – if you can – because our immune systems are trying to tell us that we are worth fighting for.

It’s time to say Thank you to your immune system for working so hard.

After all…It’s the thought that counts.

Stop Reading; You Are Enough

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Feature image from Bookmania.

If you are like me, then you have probably subscribed to a number of ITP blogs and websites; you may have even set a google alert to inform you of the latest ITP research and news.  Maybe every now and again you do a random google search to see if there is anything new to read.  Perhaps that is how you found this article?  If you’re a parent or caregiver, you are probably finding yourself a tad obsessed, trying to keep up with everything that is going on with ITP.  The more I read about ITP, the more I am sent round in circles; the more I search and scramble for answers, the more I have to read.

This morning I had a thought - I can’t read it all.  

Today, with five different web tabs open, I stopped.  I stopped researching, I stopped making lists of things I needed to read and I turned off my Google Alert.  I can’t read it all, and even if I did, I wouldn’t know any more than I do now because the information is changing so rapidly.  I can’t keep up.  Every few days there is another newsletter in my inbox from PDSA, from Google, from Support Groups around the world, boasting the latest news – the latest research, latest everything!  I am probably making the whole thing worse, by giving you one more thing about ITP to read.  Sorry. Continue reading

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.

 

 

 

 

Fear of Traveling with ITP & How to Overcome It

Flying with ITP

Traveling Fear. When I told my family that I wanted to travel to a third world country, and live there for two months, without a haematologist in sight, my plans were not received well.

I have written before about Chronic illness and Fear.  It is a hard thing to speak about; a difficult thing to confess to.  But what is also difficult is trying to manage other peoples fears about you.  I wanted to chat about how scared I was but excited at the same time.  What I found myself doing, as I slowly prepared to leave the country, was placating everyone else’s fears about my plans.

Admitting that you’re scared about something is a really hard thing to do.  Even more so when you admit your fears and you hear this, ‘Well, don’t go if you’re so scared.’

I didn’t want to simply ‘not go’ because I was worried.  I did not want to live my whole life in one country because I was worried about what my travel insurance would and would not cover.  I just wanted to talk about it.  (Just to be clear –  I had decided I would not go if my platelets were under 30 – I got them to 44 before we left.  And leave, we certainly did!)

For the last hundred years, mothers seem to have been running a really great marketing campaign for worry.  Mothers have sold the world on the idea that worry = love.  (Jenny, if you’re reading this, I love that you worry about me – Never stop!)  What I am talking about is the idea that people share their worries about you, as a way of telling you they love you.  Can you love someone and not worry about them, I wonder?

traveling with ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

Elephants in Thailand

When I realised that I could not get travel insurance for anything related to ITP, I did not give up.  I called a few companies and eventually found a plan that would allow me to register my ITP with them, and the medication I was taking as a preexisting condition.  I would still be covered for theft, stolen property, natural disasters and car accidents that weren’t my fault.  I was told the sports I was not allowed to do and would not be covered for, and I was not allowed to hire or drive a car.  I had to register that I was immunocompromised and they told me that there would be certain health conditions that I would not be covered for.

When I spoke to my doctor about travel insurance we spoke for a long time about the potential risks and banned me from patting dogs in Thailand.  Done.

I kept planning.  I kept hearing about all the terrible things that might happen to me, from a few people around me, and from my own head!  Planning my trip was wrought with fear.  As the date to fly out came closer and closer, it was hard to tell what part of that fear was reasonable.  Had I just worked myself up, or was this really a stupid idea?  Of course, we should not get complacent…

I tried to imagine, I was healthy, what would I be afraid of.  Would I still be freaking out?

traveling with ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

Indonesia

traveling with ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

Fiji

 

 

Being Scared.

So guess what – It’s ok.  Let yourself worry, as much as you need to.  But still go.  Prepare as much as you can, and then go.  Let your friends and family say everything they need to, and worry as much as they like, and love them for every moment of it – But still go.

traveling with ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

New Zealand

How do you get over your fear of traveling?  In short, you don’t.  You just go anyway and hope for the best.  I have made a check list for before you travel, here.  Of course you need to be sensible and safe, and always chat with your doctors about everything you are planning – and then go.

If you are prepared and smart and care for your body at all times.

Then just go.

ITP Conference 2014

itp conference PDSA 2014

 An International ITP conference will be held in a couple of days at Manhattan Beach, California.  The conference, aimed at patients, caregivers and the medical community will be held from July 11th to the 13th at Manhattan Beach Marriott Hotel.

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The 2014 ITP Conference will be held at Manhatten Beach, California

It will be the 14th Conference of it’s kind organised by the wonderful people at PDSA America, The Platelet Disorder Support Association.

The three day program will include authors, researchers and clinicians who all have a strong interest in helping ITP patients.  There will also be PDSA Medical Advisors who will present programs at the conference.  This conference provides a great opportunity to hear the latest information on ITP, meet others who are coping with ITP, and receive answers to any questions you might have. It is also a wonderful opportunity for carers of ITP children to meet other people caring for ITP patients.  There will also be a patient mixer on Friday evening and a special family-oriented party Saturday evening.

The Full Program for the Conference can be found on the PDSA website.

It will be a great opportunity, if you have a chance to go.

We are particularly interested in this presentation by Martin L. Rossman titled, If You Can Worry Yourself Sick, You May Be Able to Imagine Yourself Well?  Dr Martin Rossman is a pioneer in mind-body medicine. He is the founder of The Healing Mind, the co-founder of the Academy for Guided Imagery, a Clinical Faculty member at the University of California San Francisco Medical School, and an advisory board member of Dr. Andrew Weil’s Integrative Medicine Program at the University of Arizona. 

For the Complete List of Speakers who will be attending the Conference in 2014 Click Here. 

Registration

ITP conference 2014I believe there is still time for you to register if you are going to be in the area.  If you would like to Register for this years Conference simply follow the link.  

If you have any questions or require assistance while completing the registration form, please contact the PDSA office  at (301) 770-6636 or (877) 528-3538 or via email at pdsa@pdsa.org.

 

 

 

ITP in the News & Media

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

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.

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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.  
 
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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,

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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

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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. 
 
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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

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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

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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.
 

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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.
   

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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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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.'