Sameena

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THE UNSUCCESSFUL SUCCESS STORY OF AN ITP PATIENT

I tried to stay away from regular use of steroids as much as possible. But like with any chronic disorder, medication is inevitable. And to think that 8 months ago, I was going about my normal life thinking I was healthy as a horse and all the while my immune system was planning an attack on my own platelets.

Although it is not like it sprang on me all of a sudden. Come to think of it, there were some signs of platelet disorder way early.

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorderI guess it all started with the bruises. For 5 years, I thought they were just bruises. Random. I mean, you get a little round purple bruise on your leg every month or so, you don’t really worry about it. You give some lame explanation like: “maybe it’s the hormones from my menstrual cycle” or “maybe I just bumped into something and did not realise”.

About a year and a half ago, I noticed that the bruises were getting bigger and more frequent, which scared me a little but the bruises sort of faded away in a few days. Continue reading

Sleep Apnoea and Autoimmune Disease

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Feature image from KINGWALLS

I have always struggled with sleeping, more specifically, the waking up part.  I had always thought it was a combination of being lazy, doing lots of exercise, and having an autoimmune disorder.  I never dreamed that this whole time, for almost 30 years, I’ve been struggling to sleep, almost choking to death in the night from sleep apnoea.  FU*K!

A recent trip to the dentist confirmed just that.  I had been concerned that my teeth were moving around a little in my mouth.  I was worried I would end up looking like future Lisa Simpson if she never got braces.  I verbalised my concern to the dentist, asking if there was some sort of mouth plate I could wear while I slept.  I told him my jaw and cheeks often hurt a lot when I woke up and I was worried I was clenching my jaw or something.

Three weeks later, one overnight sleep study and a long look inside my mouth and ears confirmed that I had been struggling with mild sleep apnoea for probably my whole life. Continue reading

How to Heal A Bruise, An ITP Book

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For Patients and Parents living with ITP,

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There is so much information available about the medical problems of immune thrombocytopenia.  Written by doctors and professionals, it’s difficult to read and even harder to decipher. Medical journals and scientific papers never address the questions you actually want answers to – What is it like to live with ITP?  How can I still live my life?  What will it feel like now that I have ITP?

HOW TO HEAL A BRUISE was inspired by Meghan Brewster’s most popular ITP articles.

 HOW TO HEAL A BRUISE includes stories from Meghan’s ITP Journey, some of the latest ITP research and advice for living a life with ITP.  This book is comprehensive yet easy read; from a person who actually has ITP.

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About the Author, Meghan Brewster

meghan brewster, author, how to heal a bruise, itp blood disorderMeg was diagnosed with immune thrombocytopenia when she was 22 years old.  She struggled to read dense medical journals and scholarly articles to learn more about her ITP.  What was missing from the ITP conversation was information from other patients, about what immune thrombocytopenia was really like.  

In 2012, Meg set up ITPANDME.  Three years later, it’s one of the largest ITP blogs in the world.  Meg has been writing about ITP for more than 6 years, has heard hundreds of patient stories and answered many questions about ITP life from patients and parents.

HOW TO HEAL A BRUISE is an honest account of her journey with ITP, as well as practical advice for living with ITP and information from some of her most popular articles.

This book takes you through the stages of ITP from coming to terms with your diagnosis to finally accepting and thriving with ITP, what to expect while living with ITP and how to make sure it doesn’t take over your life.  An honest and informative account of living with an autoimmune disease.

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Praise for How to Heal a Bruise

The book includes lots of ITP information such as, the science, history, tips and guides, alongside strong emotional support. It is now my own ITP Bible! I could not recommend it more highly! FULL REVIEW HERE from Katie Meloy

Beyond being a book documenting scientific and medical information, is the personal experience of Megan Brewster after seven years of living with this blood disorder and is enriched in fourteen chapters…I didn’t know what to expect on How To Heal A Bruise, then simply I couldn’t stop reading.  FULL REVIEW HERE from Laura

‘My partner and I absolutely love your blog and find many of your post’s to be just what we are looking for.’ Andy USA

‘Thank you for your thoughts…they’ve helped me with finding perspective in our reality.’ Jenny Australia

‘Love the way you write.  Meg, you made me chuckle.’ Bron Australia

‘Thank you for writing this, it will surely help the newbies.’ Padma, India

Features

  • The History of Immune Thrombocytopenia.
  • Practical Diet and Lifestyle advice.
  • Pregnancy and Babies with ITP
  • Advice on Natural Therapies and alternative medicine.
  • Possible Isolation and Depression from an ITP diagnosis.
  • Covering up Bruises, tips for healing and hiding bruises.
  • First aid tips and tricks for around the home.
  • ITP fears and how to overcome them.
  • A Huge list of References – Meg’s favourite blogs, books and ITP Resources.

Three Years of ITP and Me

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Feature image from SARAHCOUCH

When I started this blog three years ago, I had no idea what was going to happen.  I thought at best it would be a hilarious side project while living in Indonesia, at worst I would have a few months of learning a little about putting a blog together.

This was in 2012, four years after I was diagnosed with ITP.

At the time, while living in a bright blue house (just like Frida Kahlo) down the road from Schapelle Corby’s cell in Kerobokan Prison, I had no idea what I was doing.  I expected this blog to have very few readers and that I would be bored of it in a few months, hopefully having learnt a little along the way.

I knew very little about websites and at the time my biggest goal was to install a widget and change the colour of the link text.  ITP and Me started as a beige single page blog roll with a fixed impractical menu bar.

I did not expect that ITP and Me would end up holding my attention for so many years, have thousands of people following from around the world, and inspire others to share their ITP stories.

What I have Learnt in these Three Years

There is no ‘typical ITP story’.

Meeting other people with ITP is not always that helpful.

Often I feel even more confused and isolated when I hear of other people’s experience with ITP.  Even though we all have the same disorder, we are all going through something very unique and personal to each of us.  I have learnt that, while it is called ITP, we do not all have the same autoimmune disorder.  Chronic patients have different experiences to acute patients and children are different again to adults. Continue reading

The Beginners Guide to ITP; What to Do After You Are Diagnosed

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Feature image by CLAUDIABRUNO

ITP or immune thrombocytopenia is classified as an autoimmune disorder.  This is because it is the immune system, either over functioning or faulty in some way, that targets and destroys the platelets in your blood.  ITP is diagnosed by a low platelet count after the exclusion of all other causes for this deficiency.

So you have just been diagnosed with ITP.  Firstly, welcome and don’t worry.  Though it will certainly change your life, having ITP is not going to ruin your entire life.  This article is going to walk you through the first steps you should take after your diagnosis.  It will be easy and you can learn from our mistakes.

1. Start Tracking Your Platelet Count Now

Keeping a close eye on the rise and fall of your platelets is key to removing a lot of the FEAR and worry from ITP.  Over a long period of time, patterns will begin to emerge and you will start to connect platelet drops with other environmental factors. 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 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.