Coconut Water – Treat or Treatment?

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Feature image from ITPANDME

As I learn more about the benefits and pleasures of coconut water I will continue to update this page.  But for now… Here is what I know

I started drinking a lot of coconut water in Bali.  It was everywhere, it was tropical, local and guaranteed to be sterile and safe to drink when you saw them open the coconut at your table.  I fell in love with the taste and found them so refreshing.

One day when I was buying coconuts at our local market, a woman who worked where we were staying, came over to speak with me.  She had seen the coconuts in my hand.  Her English was sparse and my Indonesian was non-existent, but she held her hands to her stomach and inclined her head.  With a pained face, she asked me, ‘Your tummy not good?  You have lady time?’

I smiled and shook my head.  My tummy was fine and it was not my ‘lady time’.  She could not understand why I was choosing to drink coconut water for no reason.  To her, it was medicine, to rehydrate the body, to calm the stomach, to relieve menstrual bloating and to give to ill children.

Now that I am back in Australia, I still drink a lot of coconut water, a few each week.  But always fresh from the coconut.  I make sure that I never buy it bottled.  The fresher the coconut water, the better. Once exposed to air and warm temperatures, it rapidly ferments and loses its nutritional value.

ITP Awareness Day

ITP Awareness Day Is Getting Big!

What started in America, has actually spread around the world.  Wether it is a recognised day or not, it does not seem to stop us from celebrating ITP Awareness day around the world.  Here in Australia, I had an appointment with my Haematologist on September 28th and the first thing she said was “Happy ITP Day!”  Here in Australia we have been making ITP Awareness Day cup cakes and decorating the house!

ITP Awareness Day – 28th of September! 

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purchase here

Support the growing awareness of ITP in communities by wearing a PDSA ‘Got Platelets’ bracelet on September 28th, 2012.  These bracelets are a being sold by the Platelet Disorder Support Association for just $ 3 each.  Show your friends and family that you are there to support them.  There is a lot of miss understanding around itp, and a lot of the unknown.  Wearing a bracelet on September 28th might spark a conversation, and one more person will become aware of itp.

Awareness Day

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ITP is a growing but little understood health problem that most people (including some medical professionals) have never heard of. It affects individuals of all ages, sexes, and ethnic origins and ten times as many people as hemophilia.

 



Fortunately, substantial progress in understanding the mechanisms of ITP has been made in recent years. New treatments are now available. As research continues, however, the challenge continues to educate healthcare professionals and the public about this disorder. ITP patients and caregivers often feel they know more about the disease than their healthcare providers. As a result, there has become an increasing need for ITP Centers of Excellence to study, treat, and accurately record data to further understand the disease. Similar centers have proven highly successful for studying, recording, and treating other bleeding disorders like hemophilia and sickle cell disease.

 

Screen shot 2014-03-14 at 3.28.31 PMWhile there is no cure for ITP, more is known about the disease each year and new treatments become available. But there are still so many unanswered questions.

 

Join PDSA this September as we come together to make ITP as well-known as cancer and heart disease. There’s never been a more important time to power up, get pumped, get in the game, and sport purple for platelets!!

#itpawareness on INSTAGRAM

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New International ITP Register; Founded in Australia

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On the 5th of March 2012, a Media Release was sent out to announce the opening of the first International Register for ITP (Idiopathic Thrombocytopenic Purpura) patients.  Australians will be proud to learn that it was started by the Australian Professor Beng Chong from St George Hospital.  While there is a lot of information being circulated amoung medical professionals, this Register will be the first official link between haematologists around the world.

 The registry has attracted interest from renowned haematologists worldwide.

itp international register
Full Media Release Here

Registry Project Manager, Sarah Davidson, said the registry would enable clinicians to build a complete picture of ITP and collect data from many ethnic groups across the world.  “There is increasing evidence that the disease and its response to drug treatments could be very different among patients with different ethnic backgrounds,” Ms Davidson said.

In Australia, with such a widely spread out population, patients with itp pop up in small numbers, spread out from each other.  Collecting data where ever possible will help to finally build a comprehensive and accurite portrait of the disease.  Professor Chong stated that “There is a lack of necessary data concerning the epidemiology, diagnosis and treatments of ITP, which is needed to improve patient management and healthcare planning”.

The registry has attracted interest from renowned haematologists worldwide, including those from Japan, Korea, India, China, Singapore, Turkey, Israel and Brazil.

The registry is open to recruitment at St George Hospital and is taking on patients newly diagnosed with itp.  If you wish to be a part of the study or would like more information contact Sarah Davidson, Registry Project Manager on 9113 2446.

 

Paleo – Week Two

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This week I am feeling a dramatic increase in overall energy.  I wonder if it is a placebo – Perhaps I just feel better because I feel in control of my diet and have found new inspiration for food and ingredients.  Time will tell.

I am feeling more confident to tell friends and family that I am eating Paleo.  I am ordering different foods at cafes and I am asking more questions.  They are interested, so excited, others defensive about my choices.  I am enjoying discussing it with friends and family, and laughing at how many times I have been told, that you simply can’t do that.

At the end of week two eating paleo, my skin is starting to clear up.  Pimples are disappearing and black heads are shrinking. Continue reading

Cutting out the Chemicals

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Chemicals in our Foods

There are too many ingredients in our food that we do not know enough about.  While traveling through Indonesia, I recently came across a bird nest flavoured product.  The indregients actually listed Bird Nest Flavour as a component.  What this could possibly be?  I have no idea.  Even when we actively read the labels of the foods we consume, we might be no where near understanding what we are putting into our bodies.  Food additives, colourings and thickeners may all be listed, but where did they come from?  What are they made of and how?  As a patient trying to manage my own AuIm Disorder, I have enough chemicals in my system as it is.

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‘bali markets’ image copyright meg@itpandme

Going Paleo 

In high school, I learnt about drugs and chemicals in the body from our PE teacher and the lesson that stuck with me was the basic maths of drugs and chemicals, 1×1=3.  I don’t know nearly enough about the drugs I am taking to be certain that they are compatible with the plethora of chemicals in foods today.  Nor can I find anyone who is certain.  Therefore, I am going to do the most logical thing.  I am going to cut out the chemicals and I am going to do this by ‘Going Paleo’.

‘Going Paleo’ is not for everyone.

If you haven’t already heard about the Paleo diet, here it is in brief.  It is the modern day return to the diet of the Paleolithic man.  Before modern mass farming, genetically modified foods, refined sugars and pre packaged foods, human beings lived on a diet free from chemicals, which consisted of nuts, eggs, seeds, meats, vegetables and fruits.

‘Going Paleo’ is not for everyone.  Vegetarians and vegans will probably find this sort of diet, high in protein and eggs, far from a sensible option in terms of eating but I am not a Vegetarian or a Vegan, and   ‘Going Paleo’ has come highly recommended from the Autoimmune Disorder community.

If you are looking for a great introduction and blog to read about cutting out chemicals, I have to recommend Sarah Wilson’s blog.  this is one of the first blogs I found on line and it was such a please to read and follow.  I now have a few of her Cookbooks and Detox Programs.  I am still baking her blueberry muffins four years later.