ITP & Raynauds Phenomenon

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I have recently been diagnosed with Raynauds Phenomenon.  It happened during Winter, at a particularly cold time on the South Coast of NSW.  I noticed the tip of my finger was aching like I had pins-and-needles.  It seemed to be ‘asleep’ and no amount of rubbing could get the feeling back.  After about a week of very strange circulation and I went to the doctor…

Raynauds effects the small blood vessels in the extremities of the arms and legs.  What is best described as a spasm in the blood vessels, they contract episodically and expand at strange times.  Episodes of Raynauds can be caused by both cold temperatures and emotional stress.

What Does Raynaud’s Look Like?

Raynauds Phenomenon most commonly manifests itself as poor circulation.  Your fingers and toes become cold and pale.  This is because there is little to no blood in the extremity at the time.  Fingers may then be rushed with blood and turn purple.  Raynaud’s Phenomenon causes significant colour changes in the fingers and toes.  Fingers and toes feel cold and are hard to warm up.  Areas affected by Raynauds can appear blotchy, like red and white splotches and when you press the area, a white circle remains for more than three seconds.

Raynauds as an Autoimmune Disorder

The first thing you notice when looking for information online about Raynauds phenomenon, is the strong link to other Autoimmune Disorders.  Many websites have information on Raynauds and something else.  Raynauds and ITP.  Raynauds and Lupus.  Raynauds and Polymyositis.   Continue reading

ITP Christmas Gifts

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

Christmas is a time to gift the gift of love.  If you are an ITP’er, or know one, here are a few ideas for Christmas.  I have been the recipient of a few of the gifts below, and I can’t tell you how much they meant.  Below are our highly recommended gifts for people with ITP this year.

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I would like to add to Robert’s story if I may, and tell you about my experience with ITP.

I lived in Australia at the time but was on holiday in New Zealand when I was diagnosed. That was two years ago in December 2012. I was 57 and had a platelet level of 4,000. Before this time I had previously been fit and healthy, although recently under a lot of stress. Over the course of the first year I was on the same roller coaster Robert describes. I had all the tests and infusions. My platelets went up and down, and the dose of Prednisone increased or decreased to try and manage it.

After being on high doses of prednisone for so long the side effects were awful. I didn’t recognise the big moon face staring back at me from the mirror, and my brain was in a fog. Because of this fog I went along with what the doctors were telling me. They had said at the beginning my best option was to have my spleen removed. I resisted for as long as I could, but in October 2013 I finally gave in because I had to get off the prednisone. After the operation my platelets went from 6,000 to 665,000. Things looked promising and I started to reduce the dose of prednisone very slowly. But less than four weeks later they had plunged to 9,000. The splenectomy was a failure and I had to increase the prednisone again.

I didn’t want to accept what everyone says about ITP; that there is no known cause and no known cure. With my platelets hovering between 13,000 and 73,000, over the next two months I wracked my brains to try and think what might have happened in my body to cause my immune system to go haywire. It took all of that time to realise it was actually a chain of events that triggered it. I believe it started with my overuse of Nurofen which I was taking for chronic back pain. Nurofen contains the analgesic ibuprofen, an NSAID. Nurofen is known to damage the intestinal lining if overused, causing a permeable gut. I only discovered this after I had a bleed. I stopped taking it immediately but by then the damage had been done.

With toxins now leaking from my gut into my body, my immune system went into overdrive. This led to an acute sensitivity to salicylates, a naturally occurring chemical found in most foods which I’d had in a mild form all my life without realising it. Now I had IBS in a big way but still didn’t know it was salicylate intolerance. It started very suddenly and at first I thought it was gastro. But it kept happening after nearly everything I ate. I was losing weight fast. My doctor sent me for lots of tests which all came back negative. He didn’t know about salicylates so just said to take antacid when I needed it. Continue reading

ITP – Running in the Family

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

Many doctors will quickly dismiss any likelihood of passing ITP from mother to child during pregnancy.  That is because it is incredibly unlikely.  It is rare for an ITP mother to give birth to an ITP baby.  And yet, in many cases you have probably heard that you have a ‘genetic predisposition’ to the Autoimmune disorder.  Where do our genetics come from again?  Oh that’s right.  Our parents.  

Firstly, I want to let you know that my mother and I both see the same Haematologist; ITP, autoimmune haemolytic anemia, Hughes Syndrome, Lupus Antibodies, SLE and now Raynard’s Phenomenon.  But I have three other siblings.  So if I got ITP from my mum, then we would all have ITP right?

The other day I read the story of Beckie Mostello whom after battling ITP herself, found out her 10 year old daughter also had ITP.  This was after she herself had become healthy and believed that ITP was in her families past.  It is really just a fluke?  I can’t believe it.

Another young girl wrote to me a few months ago, explaining the story of her diagnosis and how her mother has been dealing with ITP in her life too.  At the time of writing to me, she was struggling with coincidence of it all. 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.

My Secret ITP (Bad) Habits

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

After living with ITP for a long time, I have developed some great habits.  I am healthier and more physically aware of my mind and body than I have ever been in my life.  In many ways I have been through all those amazing changes people rant about online after they get diagnosed with an autoimmune disease.  

I exercise, I drink plenty of water, I de stress, I pretend to mediate, I go to yoga once a week and take care of my body.  After repetition, these changes have become habits.  That is what happens over time, actions become habits.

Most of my new habits are wonderful.  A few of them are not.  Nobody is perfect right.  Along the way, through repetition, I have also picked up a few bad habits.  This are my habits I need to confess.

1. I Miss my doctor’s appointments – Doctors appointments used to be a very big deal.   I remember when I was little, a doctors appointment was a reason to take a day off school.  Doctors appointments used to be rare and important.  What I have found is, the more doctor’s appointments you have, the more common and unimportant they become.  This is especially important if every time you go to see a doctor they same the same thing to you.  Sometimes I book them months in advance and by the time the appointment comes around – well I am actually busy.

2. … And sometimes I don’t cancel - I don’t do this on purpose.  I don’t want my doctors to hate me.  I just sometimes forget to cancel.  And other times it is impossible to cancel.  When I am calling certain clinic’s within the hospital it is impossible to get through.  I get sent round in circles for 30 mins and then I just hang up and go about my business. Continue reading