Our Stories

John

John noticed ITP symptoms while traveling with his family.  He had always had a comprised immune system since childhood, but never had the ITP symptoms until later in life.  When his platelets drop john feel's more tired and needs to lie down.  Read more about John's ITP journey here. 

Regina

Regina is our youngest contributor to share her ITP journey. At 14 years old, her perspective on ITP is quite unique and yet perhaps the wisest, ' Take your time before you make a decision and make sure it’s right for you.' A wonderful insight for interested parents.  Regina never has the flu, which is common among ITP patients.
Incredibly lucky to survive a car accident with ITP, read more about the details here.

Clarissa

Clarissa is one of the few ITP patients who's platelet count actually fell down to zero.  She received a platelet transfusion as wrll as steroids to treat her ITP.  Clarissa has done it all as a single parent to two beautiful boys.  Dealing with the same steroid side effects that worry everyone taking steroids long term. 

Sameena

Happily living with ITP, through the support of low dose steroids, Sameena has changed a lot about her life since being diagnosed with ITP.  From Australia, her story is particularly relevant to those of us here on the East Coast.

Bron

Bron's ITP journey is, to be very honest, unbelievable.  She has battled through every treatment for ITP imaginable, from drugs to surgeries and alternative medicine.  Bron's story is one of stress induced platelet falls, early pregnancy loss and wonderfully, an ITP birth.  You wont believe it till you read it but yes, her son developed ITP as well. 

Mizzie

Mizze, an Australian vegetarian employed in the defence force.  Mizzie was diagnosed after extreme abdominal pains, digestion irregularities and some concerning bleeding.  Married with two children, Mizzie has since been diagnosed with Chronic ITP and is looking forward to life returning to a new kind of normal. 

Andrea

A registered nurse who saved her own life by comparing her leg hair to another nurse on shift.  That was when she noticed the petache on her legs.  Unexplained pregnancy loss and a whole heap of blood tests.  Read more of Andrea's story here.  

Cheryl

Cheryl's journey with ITP took her through a range of treatments including a Splenenectomy early on in her treatment.   Then Cheryl started investigating alternative therapies including diet, with some amazing results.

Meg Louise

Meg Louise should have been diagnosed a long time before she was, as people around her where commenting on her bruises.  Instead she decided to put off going to the doctor, fearing that they would tell her she wasn't able to travel around the world.  'I thought – What ever is wrong, I will deal with it when I get home...'

David

David's ITP journey is one of the most interesting we have ever read.  Ex United States army, drinking camel milk during Dessert Storm!  Incredible.  Did you know that your body can shut down it's own Vitamin D production?  David's did....

Jaymee-Lee

A mother and daughter both living with ITP.
Diagnosed with ITP at 13 years old, Jaymee-Lee's mother was probably the most prepared woman ever, having had ITP herself for a number of years.'When the doctor finally realised that the prednisolone was useless, he decided that treating me with Immunoglobulin infusions would be the next best idea. These weekly infusions had the same effect. This treatment was also useless. 

Azaria

Azaria's story has been shared here on behalf of her mother, as Azaria is only three years old.  She struggles with fatigue and her body can sometimes hurt so much she cannot stand having her hair brushed.  Read more here about what has happened to Azaria's child care situation and how her itp has changed the way she plays.

Robert

Robert has perhaps had the widest variety of treatments we have seen.  As a newly diagnosed patient to ITP, I think we can all relate to that very first instinct to hide our bruises from others; and yes it has a happy ending for the time being.

Contribute Your Story to the discussion

Contributing and sharing your own story/battle with ITP is a great way to help others who are newly diagnosed with the autoimmune disorder.  The writing of your own story is also a wonderful way to look back on everything you have been through and realise how far you have come.  Everyone's story is different, but we all share something that is very much the same... An understanding of the strangeness of ITP.  

 

2 thoughts on “Our Stories

  1. cherih226@gmail.com'
    cheri henderson says:

    I was recently diagnosed with ITP also. My platelets were 77,000 three months ago. Two months later, they soared to 273,000. That is where they should be. My Hematologist insists healthy diet will not help platelets rise. The only thing I can think of that I did differently these last 2 months, is sit in the sun every other day for 10 minutes.

    I do not have the red spots anywhere on me or any other symptoms of this disorder, so I’m not quite sure how they diagnosed me with it. Does this mean my platelets will go up and down my entire life? Also, my specialist said it can affect the organs. I see nothing on line about this. Does anyone know? I do get fatigue and sometime feel … just plain sick when I am fatigued. I honestly don’t know if the sickness is related to the fatigue…and if the fatigue is from the ITP, or something else.

    I woke up this AM & couldn’t get off the couch the entire day. Was extremely tired and felt like something was severely off…as you might imagine how it might feel if your elecrolytes were off. Felt this way all day. Does anyone else have any of these symptoms? Does anyone know about ITP affecting the organs and muscles?

Leave a Reply

Your email address will not be published. Required fields are marked *