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 sometimes it is caused by a dysfunctional immune system.
  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 – instead of just killing them all.
  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.

Living a long way from Medical Care

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ITP Medical Care, Living with ITP, Traveling for ITP Care, ITP and Me05 August 2013 – I don’t know if I have told you but I have recently moved out of Sydney, down the coast a few hours back to the town where I grew up.  It is so lovely here.  We have everything we could possibly need, accept for one thing.  Haematologists.

What if you don’t live close to a hospital?

Today I went to get my car key fixed.  Standing in the lock smiths workshop I had a clear view of the town airport.  Looking out onto the run way I saw a helicopter land and an ambulance drive out onto the tarmack.  I got to thinking.  I was called away from the window to pay, so I never saw who or how they were loaded onto the NSW Ambulance helicopter.  I turned back in time to see the front lift off slowly, methodically, and then the back, lifting level, It hovered there for a moment appearing like it was struggling to get higher, just a metre off the grown.  Waiting for something, suspended and then it was gone, buzzing through the air, up and forward, north to Sydney I thought.  The image stayed with me – and inspired this post.

Traveling over 6 hours for visits

For me to get to see my Haematologist I have to travel for more than 6 hours in a car – each way.  I thought it would be fine.  We made the last trip up, and it all felt like a holiday really.  Now that my next appointment is coming up, I don’t think I have the strength.  It feels like we just got home and now we are turning around and driving back to Sydney.

Long term Solution?

There is no other solution for us, other than to move back to the city.  We understand the risks, and so must you, if you choose to live away from Expert Medical Treatments.  Don’t get me wrong, this can be scary.  Watching that ambulance drive out onto the airstrip I was overcome with fear that that might be me one day, or a member of my family.  I am just so grateful that we live in Australia and I guess I cant complain at all when you consider everything that is afforded us.

This is just part of my life, Living with ITP, and I am getting used to it – as Shit as it all is.

Have You Heard of Louise Hay?

You can heal your life

Feature image from AMAZON

I have known about Louise Hay for a while.  I thought everyone knew about her work, and her company Hay House.  I was surprised to discover just how many people have not heard of Louise Hay, considering how widely successful and interesting she is.

Through Louise’s healing techniques and positive philosophy, millions have learned how to create more of what they want in their lives, including more wellness in their bodies, minds, and spirits.  Louise was able to put her philosophies into practice when she was diagnosed with cancer. She considered the alternatives to surgery and drugs, and instead developed an intensive program of affirmations, visualization, nutritional cleansing, and psychotherapy. Within six months, she was completely healed of cancer.  Louise Hay [dot] com

Louise Hay is a motivational speaker, alternative health practitioner, writer and public figure.  She is also the founder of HAY HOUSE Publishing.  Hay House Publishing begun as a small project run from her house, which grew into a hugely successful international publishing company.  Hay House Publishing focus on self-help books and have all the big names on their list.  Check them out.  These guys are the ones that published Jess Ainscough’s book, MAKE PEACE WITH YOUR PLATE.
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ITP Conference 2014

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 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.

 

 

 

A big list of The Best Autoimmune Disorder Blogs

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Autoimmune and Autoimmune-Related Diseases

The thing about Autoimmune disorders is that people rarely have just one.

We are making a huge list of great Autoimmune Blogs for those of us who are blessed with more than one Autoimmune Disorder.  If you have a great Autoimmune busting blog that please share below.  We are looking forward to collecting the most fantastic list on earth!

THE LIST

a

Acute Disseminated Encephalomyelitis (ADEM)

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Fear

ITP Symptoms treatment

Feature image from HEALTHYPLACE

There is a part of being chronically ill that a lot of people don’t talk about – Fear – but I thought we should have a little chat about it now. Why not?

I can remember when I was first diagnosed with ITP (5 years ago now) I became afraid of the strangest things.  So many aspects of my life that I used to take for granted where suddenly fraught with danger and worry.

I was a ‘sick’ person and standing at the top of a flight of busy stairs was a frightening idea.  I became scared of riding my bicycle on the road around the city, and crossing a busy street.  I was afraid of knives, blades and hitting my head on the kitchen cupboard doors.

The blood rushed, I grabbed my foot to my chest and held it so tight my knuckles turned white.

I was scared of hurting myself and bleeding in front of others, of having them stare or fuss over me.

All of these things were always a danger – but I had been made aware of them now, and I was finding it hard to ignore.  Eventually – over the years, a lot of these fears have moved to the back of my mind, replaced with other worries like being late, or loosing my wallet, but there is one fear that is still with me.

I am still afraid of being alone. I don’t mean romantically, I mean actually alone.  I am scared to live in a house on my own.

A few years ago I was at home one night, rearranging our house.  We must have just moved in, because I had been to Ikea and bought a few photo frames to frame so old sketches from Art school.  I was so careful removing the glass and  unscrewing the sides, leaning everything against the end wall as I went.

I stopped mid project to make dinner – and when I returned to the lounge room, I walked carefully around my projects admiring how a frame can lift a drawing so dramatically – When I heard a dull crack and felt a hot white slice – burn through my foot.  The blood rushed, I grabbed my foot to my chest, and held it so tight my knuckles turned white.

One glass plane had slide silently down the wall onto the carpet and lay invisibly on the carpet.

To this day, I still feel sorry for my mother, for the horrible phone call she received from me that night.

I have not found any way of making that fear go away. Sometimes, I think that there is no cure for fear, you just learn to be ok with its presence.

If you know someone that does suffer a chronic illness perhaps ask them about their fears, get them talking about what they have become afraid of.  It can reduce the power, if fears are known and understood.

You have your own fears without getting caught up in the fears of others.  In the past I have been influenced by other people being scared for me.  Like the nurses when I went to get my contraception changed, or friends not wanting me to do silly or exciting things.  Family not wanting me to travel too far away.

They will only be worrying because they care or they are interested in what you have, either is a compliment that you should just take and shut up about.