ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Monday, September 8, 2014

Something New For ITP Awareness


Last month, I was sitting here in my cluttered office debating on whether I should start cleaning this place up or do something else.

Cleaning is my least favorite activity so the "something else" option was open for any clever ideas that might pop into my head.

Earlier that day, one of our fellow ITPers, Tom Schilling, had asked about where to find decals his auto-racing buddies could put on their cars and equipment to promote ITP Awareness Month. PDSA had some decals but they were too small and custom-made decals were too expensive.

Ah ha, maybe I could make something with my handy-dandy Paint.net program. That lead me to making several designs to put on various items in my Zazzle store and now I'd like to present my efforts to you.


I'm a firm believer that we need to spread the word about ITP Awareness, not only in September but all year round. So I made some coffee cups, tote bags, key chains and bumper stickers that would make great conversation starters in our quest to inform our friends and colleagues about our blood disorder.


 Take a look at the items I created and give me your thoughts, constructive criticism and any other ideas you may have on how I can accomplish my goal of "Spreading the Word."


I'm going to make more designs and try to add some T-shirts and posters to my Zazzle store as time goes on. 

Take a look, and see if there is anything you'd like to purchase. A portion of the royalties will go to PDSA.
Here are the links:
US 
UK                                    
Canada 
Germany 
Spain 

After you get to my home page, click on this icon to go to the ITP store: 

Thank you my friends and may you all have high platelets.
Happy ITP Awareness Month



Thursday, July 3, 2014

ITP and Bruises....What Can We do About It?

What do you do when you are about to celebrate one of the happiest days of your life but the bruises associated with ITP cause you to be self-conscious?

Meghan Brewster, like many of us, didn't want her wedding pictures to be spoiled by the tale-tale signs of having ITP and found a way to ease her mind. She wanted to share this information with her fellow ITPers. 

Admit it, we are all embarrassed by the unsightly bruises associated with ITP. When long sleeves and pants are not a solution, this may help.

I have had ITP for 6 years. 

When my partner and I got engaged in January 2013, I started to worry about bruises showing up on the wedding day and in the photos. 

It was stupid.  Nobody else ever notices them as much as me.  Everyone tells me not to worry.  I am embarrassed and point them out to people before they have a chance to say anything, before they notice.  I like to explain straight up that I already know they are there.  

I was diagnosed with ITP in early 2008.  It was all very scary.  I remember trying to keep it all a secret, until I knew what to tell everyone.  Apart from one of my sisters, nobody knew about my trip to the emergency department for the first twelve-ish hours.  Looking back I know I was silly to do that, but at the time it felt like such an unnecessary hassle to keep calling my family and freaking them all out.  I didn’t want anyone to worry for no reason. 

Twenty-four hours later I had a pretty solid diagnosis that was reconfirmed during the week, with every passing test.

A few years ago, I started writing a blog called ITP and Me, which has been a wonderful source of information sharing over the years.  It has allowed me to meet and chat with lots of ITP patients from around the world.  I don’t know anybody else with ITP in my social circles so it has also given me a way to share everything I have learnt with the people who might benefit the most.   

With the wedding approaching, I talked to a friend of mine who is a professional make-up artist and she told me all about covering bruises with a colour corrective concealer.  I was amazed at how little I knew and how easy it would be. 

The first stage of bruise is usually red or pink.  These are very young bruises and probably hurt a lot still.  In this first stage of bruising, the best colour concealer is one with a green base.

A deep or large bruise will turn blue or purple.  These bruises are the most unsightly and the ones you will want to cover up the most.  During this stage in the bruises' life, it is best to go with a yellow based concealer, or any concealer with a yellow tint in it.

When your bruise is at the end of its life and starting to fade, it will turn yellow or green-ish.  These bruises are the easiest to cover up as they are normally quite thin under the skin.  These bruises are best covered with a lavender based concealer before any make up is applied. 

I wrote an article about matching bruise colours to the right colour corrective concealers and it is now one of the most popular articles on ITP and Me.  Writing this article helped me to realise that people with ITP are looking for practical advice.  

Medical websites and journal articles can only help so much.  ITP patients are looking for information on how to work with ITP on a daily basis and want tips to make their disorder easier to manage. 

It turns out there was only one bruise on my body for the day of the wedding; a circular bruise on the topside of my foot.  The photographers (who were amazing) simply removed it with Photoshop.

Thanks Meg.  

We may have ITP, but ITP does not have us.  




Monday, April 14, 2014


Meredith Prescott has written 

a letter I think we can all 

relate to. We have all felt 

her anger, frustration and 

determination in dealing with

our mutual foe....ITP

Take a look at what she has 

to say


An Open Letter to ITP:
Dear ITP,
         When diagnosed with you 17 months ago at just 21 years old, I had no idea what was ahead of me.  I had no idea what you were capable of.  Truth be told, I never knew you even existed.  
         When I found out you were a rare blood disorder that destroyed my platelets, the cells that clot my blood, I was angry.  I wanted to destroy you.  I didn’t get how you could appear out of nowhere and why you targeted me.  You made me look fine on the outside but not on the inside. How could you be so fake?
         I began to learn with much research and doctor’s visits that there is no rhyme or reason why I got you.  You are not genetic and you can strike at any age.  You can last forever or you can go away any day.  I guess you just really are that unpredictable.
            It was like that time you had me fooled.  It was the first few weeks of you and I, and I was doing really well on a horrid drug called prednisone.  After all the cruel side effects, I was told it was worth it because it was raising my counts and that It would be over when I finished it. But then you hit full force and my platelets crashed.  You caused hours of infusions, fevers, blood draws and hospital stays. You have always been so painful and deceiving.
                  Sometimes you’re pretty scary.  You make me fear each and every time I see a bruise that I may be internally bleeding.  You’ve make me weigh the options of surgery and chemo.  You make me realize that there’s a chance I will undergo a splenectomy in the near future. You make me scared when my counts are low that I will have a brain hemorrhage and not wake up in the morning.
         You put tears in my eyes when I hear about those who have lost their battle. You have put a burden on my family and friends that should never have been placed.  You’ve destroyed children’s childhoods and made them grow up way faster then they ever should have. You’ve taken lives from beautiful people. You should NEVER exist.
         So ITP- you’ve made everything in my life 100 times harder then it ever should be.  You made me leave University of Maryland, my final semester in college.  You made me miss out what could’ve been some of the best days of my life. You make doctors draw countless viles of blood with painful needles each and every week.  You’ve made me wait endless hours at doctor’s offices shaking with the anticipation to hear my platelet count. You have made me try toxic treatments I wish I never had to. You have made me so exhausted even when I should be energetic. You make me live in the unknown.      
         But ITP, I personally must thank you.  You make me live my life with absolutely no regrets. If I didn’t live my life to the fullest from the beginning, I sure as hell do now.  You make me motivated to achieve things I never thought I was capable of. You have taught me things in my life that have made me wise beyond my years, that I only wish I could instill in others.  You let me experience my first heartbreak, which was you.  You have made me want to help anyone and everyone I can that has you.  You have opened the door to friendships I have with those who have you, which I cherish because they are some of the most unbelievable people I have ever known.
I am planning a second fundraiser this June with other fighters to rid you of this world, because no one should ever have to endure you. You are that destructive.
I know I can’t say goodbye to you yet, but you have made me so strong that I know I will beat you. You’ll just have to wait and see.
        
Love,
Your fighter

Meredith has organized her second annual 5K run/walk in

association with PDSA to raise money for ITP research. 

Sunday, June 8, 2014
The Livingston Oval ~ 30 Robert H Harp Drive ~ Livingston, NJ
12:00pm - 3:00pm

I know many of you are not in the Livingston NJ area but 
you can still show your support and follow her progress by 
clicking this link:

Meredith's goal is to raise $20,000 and she's already got 

pledges for over $5000!!! 

You can also participate in her Facebook event:

https://www.facebook.com/events/261358180703865/

Let's show Meredith our appreciation by supporting her 5K Run/Walk. Go for it, girl!!!!!

Thursday, January 16, 2014


Hello, my fellow ITPers.

Below is an email I received this morning. It is directed to the parents of children diagnosed with ITP.  I'll leave it up to you to research MedQuery and decide if you want to participate.

Disclaimer:
I do not know the company or the person who sent the email. I am not endorsing this company and am not receiving any compensation for posting this on our blog. 


Hi Greta,
My name is Della and I work for a company called MedQuery based in Chicago, IL. MedQuery is a medical market research company and we are hired by pharmaceutical, medical device and biotech companies to conduct paid market research interviews and surveys for them. The reason I am reaching out to you is because we have a market research opportunity and I hoping your organization could help us reach the parents of children diagnosed with ITP. This is in no means a sales approach or solicitation. We are simply interested in hearing from the parents to understand the day to day impact this diagnosis has made on their child’s life/on their life and any areas of unmet needs whether it is referencing pharmaceuticals, educational information, support groups or even physician familiarity etc.
The interview would be a 60 minute telephone interview on the topic of Latest Developments for Chronic Idiopathic Thrombocytopenic Purpura. In appreciation for participating, we are paying respondents $150 and they would need to complete a short homework assignment 1 week prior to the interview. The interviews are being conducted from January 10th - January 24th so we are hoping you can send this out as soon as possible.
I was hoping you would be able to post this on your blog and if anyone is interested they can directly contact us at MedQuery. Please call Jackie, recruiting manager, at 312-241-1649 to see if you qualify to participate. WE REALLY NEED YOUR HELP and we look forward to hearing from the blog members.
Thanks in advance!
Della Signature Final

Friday, November 29, 2013

We have a special Thanksgiving message from Meredith Prescott...

Happy and healthy Thanksgiving to all. A year ago today, I was diagnosed with ITP. It seems crazy that a year can go by so quickly but so painfully slow. I remember this date last year. It fell a few days after Thanksgiving and I was enjoying the best days of my life in college. 

While my whole life has changed, I am thankful for my family, friends, my community, my doctors and my ITP fellows. 

I am so fortunate to be here. Almost all of us take our health for granted until something serious happens. We rarely think about how lucky we are to just to live. Until a moment comes where your life is that close to the line. A moment where you don't know what's ahead. A moment of uncertainty. A future of it. That's what many go through who have ITP. 

For those that are healthy count your blessings and be thankful everyday. This year I'm thankful to be here, to have steady counts on nplate and hopeful next year, I will be in remission. 

To the ITP community, we are thankful to not only have each other  but to have continuously made strides for awareness and funding. Never give up and always fight. Be proud to be a fighter and keep making every day count.

Friday, November 8, 2013

You Are Never Alone!

Do you remember how you felt when first diagnosed with ITP?

Were you afraid, confused and felt all alone?

Bobbie Scott was given the bad news when she went to the emergency room for an eye infection. A CBC showed a platelet count of 16 and she wound up staying in the hospital for three days getting IVIG infusions.

What a shock!!! I'll let Bobbie tell you the rest of the story....


After receiving the IVIG for 3 days my platelets increased to 344 on July 31st. That was the first time I went to see a hematologist in Owen Sound, and he was going to perform a bone marrow biopsy and aspiration on me, but decided against it since my platelet level was high, and in the normal range. I was told I had to get bloodwork done weekly, just to monitor my platelet level.. and they are as follows.

August 8 - 208 
August 15 - 88
August 22 - 92
August 28 - 137   

At this time, since my platelet count had decreased and had been all over the place, the hematologist decided to perform a bone marrow biopsy and aspiration on me. I was given about a 5 minutes notice about it, and I'm so thankful that my husband was with me. We were cramped into the smallest room ever, it was me, my husband, the doctor, his nurse, and the man who was collecting the specimens. The localization freezing needle was such a burning pain and since I was so nervous as well, I was crying and moaning in pain. The whole procedure was awful. The doctor tried to make me feel comfortable by talking to me about other topics but I was in pain.  My husband, Derek, held my hand the entire time, and when it was all over he nearly fainted and had to be sat down on the floor. Seeing a loved one in pain can be very upsetting, and I think that is what caused him to nearly faint. -- Thankfully , the results of the bone marrow and aspiration came back with normal results and no cancer in my bones. 

September 6 - 74
September 13 - 81
September 18 - 54   

The hematologist decided that he would now try me on prednisone. Normally it's a dosage of 1mg/kg that a person weighs, and I weigh 60 kg. However, he started me on half of the dose at 30mg prednisone for a week, and then decreasing by 5 mg each week following.

September 25 - 158
October 2 - 110
October 11 - 100 

 The hematologist decided that he wanted my platelets to stay in the normal range for multiple weeks in a row, so he increased my dosage back to 30 mg. He stated that he wanted me to take the 30 mg continuously for 3 weeks.

October 16 - 166
October 23 - 122
October 30 - 94  

Now, the hematologist has decided to increase my dosage to 50mg prednisone for 2 weeks, and then 40 mg for 2 weeks. When I went to see him on this date, I waited a total of 2.5 hours to see the doctor and only saw him for about 10 minutes. He stated that if I had come in originally with a platelet count of what I had at this time, he wouldn't have started me on prednisone. However, since my platelet count is all over the place, he needed to treat me.
 
The next day, October 31st,  I was at work when I got a phone call from the hematologist's nurse on my work phone line. She stated that she wanted to make sure I was up to date on my immunizations, especially streptococcus, haemophilus, and Neisseria, because they may perform a splenectomy on me eventually if needed. 

What a way to get news ! The hematologist did not once mention this to me when I saw him the day before! I was very upset to get news like that over the phone with no warning, and I cried in front of my boss and my co-workers. I don't want them to take my spleen. It is the one thing in my body that fights off illness, and I don't want to lose it. I said to the nurse on the phone "what if I don't want him to take it?" and the nurse said "there are plenty of people in this world walking around without a spleen". 

Yes, this may be, but I don't even know how long I was living with low platelets, and I felt FINE! I don't know when my platelets started going low. I have no idea. I'm so completely frustrated because I can't control what my blood is doing. Is there something I can do to change my diet? Exercise? I want to do everything I can to not let them take my spleen at this point in time. I'm struggling with getting advice from my sisters, and my mom, and my husband, and my dad. I just don't know what to do at this point. I've also stopped taking my birth control (since it was the only thing I was ingesting into my body that could affect my blood possibly) to see if that will help or not. 

If anyone has any advice for me, it would be greatly appreciated. My tear ducts have almost completely dried up, because there's nothing left there anymore. I just need a positive, uplifting thing to happen because I don't know if I can take reading on my bloodwork -- platelets (LO).

Since Bobbie sent me this email, she has joined an ITP support group on Facebook and has received wonderfully encouraging support from fellow ITPers. 

I was also able to connect her with Margie Doman who also lives in Owen Sound and Dale Paynter who heads a support group in that area. The amazing thing is that Bobbie works in the same office as Margie's doctor and Bobbie's mom and Margie were classmates in school!!!

Lesson learned.....No matter where you are, how you are diagnosed, or what you (don't) know about ITP.... Help is right around the corner. Maybe not in the same town but with the ITP Support Groups - you are never alone!


Friday, October 11, 2013

I’ve Got What????

Bron Hatton is one tough Aussie! Both she and her son have ITP but they are not letting it get the best of them....

I was diagnosed with ITP in early 1998. I had been having heavy periods and felt really flat, so I thought I was anaemic so went to Docs for some bloods at 10.00 am one morning and went home. By 12.00 pm, my mother and doctor both had started banging on the door of my flat telling me I had to go to hospital as soon as possible. I had a platelet count less than 1000. Hmm, okay, freak me out folks. When I arrived, there had been a horrific accident on the highway with 5 people killed and a couple of kids needing air lifting. So I was put on a bed to the side, told they had to check but it could be leukemia and left me for 6 hours. A very anxious night indeed thinking I was going to die.

Next morning, after all the drama had settled and they got to examine me was when we noticed all the patechiae (I get dry skin so had put the dots down to that), then of course inside the mouth and then my nose started to bleed. I had lived the previous year in the UK and had a really bad dose of the flu that they think may have triggered it. So they did a bone marrow biopsy from my chest (the single most painful thing I have ever experienced), told me I had this thing called ITP, put me on 150mg of prednisone per day and sent me home after 3 days. Let’s see how you get on they said and for the next months it was weekly blood counts and bruises like I was in a fight with Mike Tyson.

 Never send a patient home not telling them the possible side effects of a drug ( bare in mind this was a while ago so Dr Google was just emerging and I wasn’t so computer offey at the time), I put on nearly 40 kilos, would go 72 hours without sleep, my skin was so thin nothing would heal, I grew hair like a nanny goat, I got the shakes, heart palpitations, joint aches like I was 100 years old and moods that could kill a horse with a single look.

This went on for nearly 2 years, with each taper of prednisone dropping the counts. At this point after finally being referred to a hematologist in Sydney (I am 250 km’s away), I was given IVIG for the first of 13 times over 3 years. I had crappy veins, not helped by the pred, so each time a cannula went in it was a nightmare. It got to the point that you got two goes at my arm then the anaesthetist was called to do it, no matter how good they thought they were, it was rarely successful.
I had 3 pic lines (a tube threaded up through my chest) by this point in order that the infusions would get through. I had a total of nearly 3 months in hospital over one year and ended up seeing a counsellor suffering from deep depression associated with all that goes with ITP.

My heamo team at RPA decided to try dapsone and dexamethasone as well , it just didn’t work so splenectomy was the next move. Again a far less educated me said yes, wish I hadn’t. I had the dubious honour of being filmed for the TV show RPA (medical documentary TV programme in Australia) whilst having my operation and all the pre- and post filming it involved. Picture me laying on the trolley in prep room, central line coming out of one side of my neck and a microphone on the other.  They filmed my follow up visit 4 weeks post-surgery with a count of 4000 to find it hadn’t work.  Again, watch and wait and have more IVIG when needed. NO WAY was I ever ever going back on prednisone again.

This was 2000, the same year I first met my husband Nick on line. He was in the UK .The next few years included getting the first of 3 port a caths inserted in my upper chest to make infusions easier and more IVIG to hold me until I was given my first go round with rituximab (rituxin, mabethera etc. many names it has)

 My first port broke so they had to go back in and cut out some tissue and stitch it to my breast bone, fun. The first Rituximab infusion leaked and I had quite the reaction, we soon learnt that I had to have a very slow rate of infusion and pre-treat and mid-way treat with antihistamine and panadol. Yay, it gave me 3 years remission though, so I was thrilled.

During this time I would often get infections and when having my counts checked regularly it appeared I had also developed immune neutropenia (the white cells that attack bacteria), so started to have GSCF Granulocyte colony-stimulating factor  injections which I gave to myself daily. These shots  gave me serious bone ache almost like shin splints which was my bone marrow working hard.
 I had gone from 5 days a week to 3 days a week in the childcare centre where I worked as the whole steroid thing and hospital stays just wore me out and I wasn’t coping with full time work.
 In between this time and in remission, I travelled back and forth to the UK several times to see my soon to be husband and places like Morocco, Spain and Portugal, all while spleen less, though healthy and happily in love.

 
In 2005, I had a 4 week top up of rituximab after my counts started to go downhill fast and I also planned a wedding and we got married. I ended up spending some time on my honey moon in a hospital with a low count, severe bruising, and patechiae. We had finally worked out that stress was a big trigger for me and planning a wedding with people from overseas will do that to you.

Things settled down for a while and we got on with life. Then the next Christmas, I thought I had pulled a muscle in my shoulder, unable to lift it at all, so went for an x-ray to find that a 10 cm piece of my port tube had broken off between my rib and collar bone and travelled down to within 3 cm of my heart. Rushed down to RPA with a count of 40,000, I had to have an angiogram and have it removed through my thigh under twilight sedation. Then they had to go in under local to have the other part removed  because they could simply not get a vein.:-( There went any easy access for the future.

We knew we had to wait 12 months before trying for a baby after the rituximab so we did and fell pregnant only to miscarry early on in 2006. I had more drops in my count and symptoms, but was keen to have a baby and was told to go cautiously and in 2007, I saw a Chinese herbalist to help me fall pregnant.

He was dismayed to hear I had had my spleen removed and knew just by looking at me and feeling my pulse. In his words, "Some think spleen idle organ till everything else has to do the work” My bone marrow and liver were working overtime and he had a lot of work to do in supporting my blood, but within 3 months of  drinking horrid herbal tea, I was feeling the best ever with great counts. I was pregnant. We were elated.

At 28 weeks my count was 83,000 and they started me on a low dose of prednisone much to my dismay but it didn’t help so at 32 weeks, I was sent to RPA in Sydney to the high dependency unit to have IVIG with a count of 28,000. They wanted it boosted before delivery .The pred gave me gestational diabetes so had to have that monitored introducing even more needles as well as blood counts. Imagine how divine my black and blue body looked. I felt like a junkie and people kept staring at my arms.

I was induced at 37 weeks because they thought Will was going to be huge. It didn’t work, so 4 days later with a huge team, I had an emergency ceaser (they were in a bit of a panic over the ITP thing though the heamo team were ok with it all.) It was uncomplicated and a waste of all the blood and IVIG they had on hand. Will's count was fine, I was fine but later I developed a clot in my leg and had 2 weeks in hospital. Happy girl with new beautiful baby, unhappy girl with ITP and clexane (blood thinners after surgery) injections.

Enjoying motherhood and married life, my counts were steady until 2010 when I had my next round of rituxin with a new heamo after my adored Professor had retired. I live in a country town where I had my past treatments but my new Doctor didn’t have admitting rights to the local hospital so it came to budget and politics. I did have to go to Sydney to have it this time which didn’t impress me but RPA hospital was paying so that’s where I went. One day a week over 4 weeks and it did the trick again. That was December 2010 and I have been as low as 8,000 and as high as 282,000 during this time.

I manage my own ITP so to speak. My heamo and I have a good understanding. (Although we did butt heads over n-plate as he wanted me to try this new sparkling drug because of the costs of Rituximab but I refused due to clotting issues).He has agreed in the future that because Rituximab is successful and pretty much the only thing that works that I can have it again.

We treat reactively, not proactively. I have a count every 3 months because I also have neutropenia so we watch the cycle. If I get a few bruises or patechiae on my abdomen then I watch for a week. If I get any wet patechiae (i.e. blisters in mouth) then I get a count done. I call the lab direct or bless, Ian my pathologist will call and say, "Bron your numbers aren’t great today. I can see a bit of a down turn you may want to check in." I can bounce around from 8,000 to 240,000 in one week so we don’t jump on treatment, and after all these years, I am kind of glad. I just don’t balk at the numbers anymore and you soon learn that each machine reads a little differently and what’s on the film might be different as well.

In May 2011, my husband and I decided to start our own computer business. I was working part time at my job in a child care centre and Will was growing fast. My hubby was feeling ill for a few weeks in August and was tested for Celiac and Chrons disease. It wasn’t that. By the end of September he had been diagnosed with Duodenal adenocarcinoma at age 38. He died in the January 2012, leaving me devastated and alone with Will, then 3.

In June 2012, Will was diagnosed with Autism  which we had inkling had been coming and he had been attending early intervention but otherwise was a very healthy little boy.

In late July, after a day at day care, I put Will in the bath only to find his little legs covered with more than the usual bruises and patechiae all over him. I put back on his clothes and took his straight to emergency. My heart sank,  I knew what is was. Over the next 2 weeks he was admitted and monitored, his count going back up to 53,000 then dropping again and being admitted again with a nose bleed. He was given Tranexamic acid (to stop the bleeding) He ended up throwing up blood so we were transferred by ambulance  to Sydney Children’s hospital. Will had had a mild cold a few weeks before and I had been struck down with the flu. It was such a torment,  I was so ill, my mum had to go with Will in the ambulance as riding in the back made me ever more ill. Finally arriving and him still bleeding, I was a mess. Bless, he was just plain exhausted and had a terrible colour. Imagine my torment thinking I had done this to him, I had handed down this awful disease and made my baby so sick. We stayed for 4 days and he had his first round of IVIG and more Tranexamic acid. We came home with a count of 64,000 and all was fine for the next 12 months, phew. Maybe he was going to be lucky and it was just an acute case.

Despite the stress and my counts down to 14,000 with some other symptoms, this year the rituximab has held its own. Thank god really because in late September 2013, Wills counts dropped to 2000. Again the same symptoms but this time his count stayed low for 2 weeks and he bled on and off but they wanted to watch and wait.  He ended up with a severe nose bleed of 12 hours so we were transferred back to Sydney, more Tranexamic acid and a week in Westmead with 2 infusions of IVIG.

It has been hard to try and back off  on Wills ITP because it is handled so differently in children, so much of what I knew or would have expected treatment wise doesn’t fly with him. There was talk of cauterizing vessels in his nose at one point and doing a bone marrow biopsy whilst he was under ga. In the end they didn’t do bone marrow but they do feel there may be a bigger immune picture in our family. They shrug their shoulders and say it is a watch and wait and they trust me to do just that...watch and bring him in if I am worried. He now has a medical alert arm band and all his emergency plans are in place for preschool and day care and for primary school next year.

My dear old haematologist was a Professor at RPA (Royal Prince Alfred Hospital) and had been involved for a lot of years with ITP research. He was always the calmest and easiest to talk to person I had met, not to mention a gorgeous Scottish accent.

He always maintained that it was the symptoms not the count that mattered and that the numbers could often cause far more stress than was required, so that’s pretty much how we treated and how I went about with life.

I have learnt that each and every person I have met with ITP presents slightly differently, reacts to meds differently and is handled differently. They call it idiopathic. I call it idiotic myself.

We have a team for me and a team for Will.  I really trust them and know I can challenge and ask questions of them and feel comfortable this way. They know I read a lot (perhaps too much sometimes). They are always willing to listen to what I do and don’t want and know that I am a very big advocate for my son. I am blessed with an amazing family and close friends and I have learnt to say yes please to offers of any help which can sometimes be hard to do. So we just get on with living life the best we can and deal with the ITP bumps along the way.

Advice I would give to folks new to this thing called ITP is be informed. Ask questions and find a medical team that you feel comfortable with. We are all different, there is not a single person who will be dealt with in the same way. So don’t freak out if somebody else says you should be doing this or that, or is horrified by your response, and don’t be shocked by their treatment either. Try not to focus on all the negative stuff that you read about what you can’t do, eat , drink, smell, etc etc. Focus on life and get on with living it.