Every year, when a Child with ITP starts at School or a pupil is diagnosed with ITP we recieve dozens of requests for our School Info pack, we have now made it easier with a PDF version you can download.

To download the pack you can scan the QR code in the image above or click this link https://bit.ly/3diKbEp

The ITP Support Association co-created the ITP Discussion Guide with Sobi to help highlight your care goals, needs and preferences.

Use it together with your Doctor to decide on a personalised care plan that's right for you.

To download the ITP discussion guide go to https://bit.ly/3RlOiye

In addition we also have Explainer Guides, one for the patient and one for your Clinician.

Patient Explainer Guide https://bit.ly/3fpf36A

Clinician Explainer Guide https://bit.ly/3r9Rl1a

We are in the process of having copies of these documents printed, if you would like copies please email This email address is being protected from spambots. You need JavaScript enabled to view it.

Translated ITP Discussion Guides

Spanish https://bit.ly/3EA5hJa

Portuguese https://bit.ly/3X2DLLv

French https://bit.ly/3OgB5pF

German https://bit.ly/3VgtvOj

Italian https://bit.ly/3Ez1Hil

Translated Patient Explainer Guides

Spanish https://bit.ly/3UCKMkA

Portuguese https://bit.ly/3X7oKbi

French https://bit.ly/3tyKrDI

German https://bit.ly/3TCFDaP

Italian https://bit.ly/3X2F8d7

Translated Clinician Explainer Guides

Spanish https://bit.ly/3X1WTJJ

Portuguese https://bit.ly/3AhSZCu

French https://bit.ly/3EwhT43

German https://bit.ly/3TFFnIm

Italian https://bit.ly/3X70rds

The Special September 2022 edition of the ITP Support Associations Platelet Journal is now available to download, this edition dedicated to ITP Awareness Week and includes some of the best patient stories from previous editions, plus info on what is on during awareness week and reports on the work of the assocation.

Printed copies for those who selected that option will be despatched from our printers shortly. Enjoy some great ITP information and some excellent articles from our members.

To download click this link (PDF File)  - Platelet September 2022 Edition

'Making the right choices in ITP management and care' – A shared decision-making toolkit for patients.

To download the English Language version click this link: Making the right choices in ITP management and care

To download versions in French, German, Italian, Spanish and Portuguese click this link: Click here

Groundbreaking new toolkit launched to support patients with rare blood condition to take ownership of their care

• Shared decision-making toolkit developed for people with Immune Thrombocytopenia (ITP) - a rare autoimmune blood disorder that causes a shortage of platelets and bruising.
• Toolkit developed via a multi-stakeholder ITP Expert Working Group led by the ITP Support Association and the UK ITP Clinical Forum.
• The toolkit will facilitate improved treatment and care by empowering and educating patients – and reminding healthcare professionals – about the importance of ongoing collaborative decision making in the management of ITP.

ITP Patient Perception Survey 2022

Over the years the ITP Support Association has carried out many surveys covering the subject of Immune thrombocytopenia (ITP). Many of you would have been aware that the association has now established a growing network of Local ITP Groups around the UK. Much of the feedback from local groups has covered subjects ranging from treatment at GP Surgeries or Local Hospitals to fatigue and mental health issues resulting from ITP.

We are now inviting feedback from ITP Patients about the level of care received and perception of how ITP affects daily life.  Your answers will be kept confidential – only the result summaries will be published. 

This survey has been sponsored by Sobi.  Sobi had no editorial control of the preparation of this material, and the content, views and opinions expressed herein remain those of the authors.

To complete the survey please click on the following link:

https://www.surveymonkey.co.uk/r/ITPSAPPS2022

ITP Awareness Week on Twitter

Keep up to date with ITP Awareness Week on our Twitter Feed.

SIXTEEN YEARS RARE AND STILL IN THE PURPLE 

By Anthony Heard

After 16 years of living with the rare auto immune condition ITP  (Immune Thrombocytopenia) I can reflect upon many incidents during that time. It has certainly been eventful, to say the least. I have jumped more fences than Red Rum and dived through more hoops than a circus performer. 

It started in 2005 when I began getting random purple bruises on my arms, legs and torso. These bruises would appear without warning and often overnight I would develop them mysteriously. Some were the size of a coin and others as big as the lid of a jam jar.

I was also suffering from acute fatigue. It was beyond exhaustion. The combination of random bruises and chronic tiredness, eventually led me to report to my doctor for a check up in July 2006.

Following that meeting, a fretful dash to my local accident and emergency unit and many blood tests, it was discovered that my platelet count was a measly 4000. It took about 7 hours to diagnose my ITP, an illness that only about 5000 people suffer from in the UK at any one time. 

Since then I have been on something of an ITP roller coaster, having many different treatments and suffering many wretched side effects whilst having some successes and a few failures. It hasn’t been a picnic by any means. I have been through the Prednisolone ringer six times, Rituximab twice and a horrible week or so with Azathioprine (I could not tolerate it all ).

I was fortunate to respond well to Prednisolone and Rituximab. With the steroid, I obtained about 6 months remission every time that I went on it and with Rituximab, I got about 2 years 8 months remission both times that I had it, in 2010 and 2013. But in February 2016, I relapsed again.

At that point my specialist suggested that we try Mycophenolate Mofetil (MMF). He was reluctant for me to undergo a third round of Rituximab as the long-term damage it might do to my immune system was not worth risking. More stints with Prednisolone were also ruled out because of the problems that it caused when I had used it before.

MMF like Prednisolone, Rituximab and Azathioprine is an immune suppressing drug which raises the platelet count by slowing the destruction of platelets. It has the added benefit in most cases, of fewer nasty side effects. 

Since February 2016 on MMF my platelets have settled at normal levels with the odd blip . I could not be more delighted.

Some ITP sufferers have had equally positive responses from MMF but as ever like with all treatments, responses vary. One important thing about MMF, is that like all immune suppressing drugs it reduces our ability to fight off infections, viruses like Covid-19, bugs, colds, flu’s etc. So, we are more vulnerable. It’s complicated.

Like any treatment, it is a matter of measuring risk versus reward. We have to weigh up the side effects, potential problems (short and long term) against keeping our platelet levels as high as possible at consistent levels.

I always remain positive about my debilitating condition but there is never any room for complacency and I take nothing for granted.

In terms of the overall co-ordination of my care, I am sure that my experiences will be echoed across the rare disease community. As ITP is just so rare I have found myself spending so much of my time explaining my condition to so many people, including healthcare professionals, GP’s, nurses,  dentists and other practitioners. ITP is just not really known or understood by anyone who is not a specialist haematologist so it makes for a really frustrating and tiresome ordeal talking about it with anyone else.

So, it is incumbent on all of us who are able, to tell our stories to spread awareness for our rare illness. Information and education is so important.

This is what drives me to take part every year in the Rare Disease Day campaign and to do voluntary work for the ITP Support Association where I set up and continue updating all of their social media platforms. I am now on the Board of Trustees as a Patient Observer and also contribute a quarterly article to their Platelet magazine 

For those who wish to follow my ITP story, please check out my ITP blog at 

https://anthonypaulh.tumblr.com 

My ITP Experience by Ian Salter

(First published in the Platelet March 2016

At the time I first was diagnosed with ITP I was a sixty-four-year-old male, newly retired and enjoying living part time in Cyprus and part time in the UK.

I was in Cyprus when I noticed bruises on my arms and legs. I thought it was due to over enthusiastic DIY, but the bruising persisted and on my return to the UK I rang up my GP. She suggested a blood test.  I offered to ring the health centre on the following day to arrange an appointment with the nurse. Instead, the Doctor wanted to know how quickly I could get to the surgery as she wanted the test done straight away. This started alarm bells ringing. Our health centre doesn’t do immediate appointments.

As the nurse was taking the blood the inside of my arm from elbow to palm turned black. “How long have you had that” she asked, “only since you put that needle in” I replied. She rushed off to get the Doctor.

Hi my name is Chris Hart I am 66 years old currently living in retirement in Cornwall. My story starts back in 1995 when I noticed my body was covered in bruises and blood spots, a day later I had started to bleed from my gums and nose. My wife took me to our local hospital where they gave me blood tests and told me my platelet count was 1. The Dr's then took a bone marrow sample from my sternum to check for leukaemia this showed a healthy production of platelets
After numerous people coming in to look and take photos for the records (there apparently there had never been anyone with a platelet level of 1 in the hospital) by this time my mouth was covered in blood blisters. The decision was taken to give me high dose steroids and admit me to the ward. After four days of steroids my count was still 1. They then decided as the steroids had no effect they needed to give me plasma this was administered via a cannula over 5 days one bag per day. This seemed to have the desired effect and my levels increased to double figures I think high 30's.

My ITP Story by Linda Willis

I thought you might like to have an update:
Following my published story in 2016 (see below) I have continued on Romiplostim as my treatment. After further adjustments to dose and interval I now have a home injection of 250mcg every 10 days and my count is around 140 so near the lower end of normal. I am still symptom free and have had 3 surgeries in the intervening years without additional need to raise platelets beforehand.
I send all ITP patients best wishes and the best possible quality of life as they are treated.

This is Linda's original story from 2016. (First published in the Platelet June 2016)

When I was first diagnosed with ITP it was August 2010, and I was 62 years old.  Whilst on holiday in Italy I noticed a lot of bruises which I put down to clumsiness, and bleeding gums which I thought was a dental problem.

 When back home I went to my GP for a routine blood test form for the blood pressure medication I was on. Having had the blood taken, we set off on the bus to do some shopping and had a pub lunch. When we got home there were numerous answerphone messages asking me to contact the surgery at once. A very concerned GP said my blood results needed to be repeated, and that I should go immediately to the Haematology department at the local hospital who were expecting me. It turned out that my platelet count had been 1, and was the same when repeated.

I was told not to move too much and admitted to hospital. I was started on Prednisolone, and after a bone marrow biopsy which confirmed diagnosis, I was discharged 5 days later with a count of 7.

ITP EXPERIENCED FROM BOTH SIDES OF THE POND By Patricia Conry

When I was living in the USA during July 2010, I found that I was losing weight and losing hair. I decided to visit my local practitioner in hopes that a medical examination and blood test would provide me with some answers. The complete blood count showed that my platelets were only 61 K/mcL. Previous blood counts in the last few years showed my platelets ranged between 267– 332 K/mcL

 Why the sudden drop. How did this happen.? I don’t know. Does anybody know? I don’t think so.

I was referred to a specialist in oncology and hematology. I asked for a reason why this happened. He guessed it must have been a virus. When I asked him to explain the ITP disease, he printed up the disease from a web site for me to read. I made three guesses of my own ideas as follows.  I had recently suffered a terrible shock regarding a sudden unexpected death of my husband.  I worked with radium to a small extent when working with patients at Guys Hospital in the 1960’s I was suffering extreme anxiety and stress at that particular time. Looking back I realize that it was also a learning experience for my practitioner because only rare cases came on his doorstep.

Heartaches and Miracles by Greta Burroughs

Even though I didn’t know it at the time, April 2005 marked the beginning of my ITP journey.

I was so tired. My brain idled in screen-saver mode while my bruised and bleeding body refused to cooperate. What was wrong with me? I definitely couldn’t solve this mystery on my own, so I enlisted the aid of a specialist in women’s health.

After a fruitless month of poking, prodding, and testing for any gynecological reasons responsible for my fatigue, brain fog, and never-ending menstrual bleeding, the doctor finally held the indecisive results in her hands. She shrugged her shoulders as she began her well-rehearsed generic answer, “Well, Greta, you’re at that age when—”

I wasn’t satisfied and asked why she’d neglected to do any lab work. I’d lost a lot of blood, and purple polka dots decorated my body from head to toe.

My question and the doctor’s ah-ha moment triggered the first step in my ITP adventure.

G’day from Australia! By Danielle Boyle CEO ITP Australia

I was diagnosed in July 2015 by accident. I went to my local emergency department with chest pains, and after a full blood count and a chest x-ray, I left with an appointment with a haematologist and the possible diagnosis of ITP.

I think we can all agree that before being diagnosed, most of us hadn’t heard of ITP, Idiopathic Thrombocytopenia Purpura or Immune Thrombocytopenia, let alone know how to pronounce it!

Like many ITP patients, I started on steroids, and the steroids’ effects were intense. I went from being a happy and healthy woman to someone I didn’t recognise. (photos from day of diagnosis to 6 weeks later on steroids).

I was lucky, though, as I was placed on a clinical trial with a treatment that worked well for nearly three years.

Liam Burns’ ITP Journey

Liam was diagnosed with ITP 27 years ago at the age of 50 after falling unwell.  Numerous tests were done and he was referred to the Haematology Department at the Mater Hospital, Belfast where he was under the care of Professor Mary Frances McMullan.  A diagnosis of leukaemia was considered until a lumbar puncture was performed, which confirmed a diagnosis of ITP.

Treatment at this time was platelet transfusions initially, however, Liam’s body destroyed these platelets and therefore IGGs (Immunoglobulins) were given intravenously.  These IGGs increased Liam’s platelet count and his normal platelet count sat normally around 80.

Liam was a tiler by trade and had to give up this line of work.  He was at high risk of bleeding and bruising. He got another job working in the Mater Hospital, Belfast as a domestic and then a driver delivering bloods to surgeries around Belfast. 

As a consequence of having ITP, which is an autoimmune disorder, Liam’s body then went to destroy itself further due to being immunosuppressed.  He went on to develop Diabetes Type 2, Crohn’s Disease, Pulmonary Fibrosis, Diverticular Disease, Haemolytic Anaemia (Evan’s Syndrome) and was more prone to infection.

Due to congenital issues, he was discovered to have aortic stenosis, which required open heart surgery to insert a tissue valve as a mechanical valve was too high risk with having a low platelet count. This also meant that in the future he would have had to have open heart surgery again, as the tissue valves do not last as long as the mechanical valves.

Liam also developed bladder stones and then gallstones, both of which caused sepsis and required procedures.  What would have been a night or two in hospital, turned into a few weeks in hospital, due to low platelets.  Liam had to receive transfusions, IGGs and immunosuppressant drugs such as Hydrocortisone/Prednisolone.

In October 2014, Liam’s bloods were all abnormal, this included his platelet count and white blood cell count – all of which pointed to a diagnosis of lymphoma; however, further tests were performed including biopsies which ruled out lymphoma and diagnosed Crohn’s Disease.

‘Chronic illness is a lonely thing’ by Karen Tomkins

For the past year I religiously text my husband, Shea, every Friday afternoon. There’s nothing unusual in that, but the weekly message contains just a number, no words. Triple digits and we’re happy; single digits and it’s time to get family in to mind the children and pack a bag for hospital.

The number I text is my platelet count. I am one of approximately 1,000 people in Ireland with ITP (immune thrombocytopenia), a rare blood disorder in which the immune system mistakenly attacks its own platelets. It can occur in pregnancy, follow a virus, vaccination, or certain medications, but for most people the cause is unknown.

Karen is one of around 1,000 people in Ireland with ITP.

Gemma Ankouri – Zayn’s Story

‘Chronic ITP’ the words that came from my sons haematologist at Southampton General Hospital after his bone marrow aspiration. The words we were dreading, the words which were also a relief, as this meant there weren’t any other health issues underlying. The words that my son, in his innocence, did not truly understand.

Zayn was only 2 years old when he was admitted into St Richards Hospital, Chichester, with a high temperature which would not go down even with Calpol. He was lethargic and had a purple pin prick rash on his chest, which would not go away when a glass was put on it.

It was a scary few hours, with the doctors thinking it could be meningitis. But after blood tests, it was thought that this was not meningitis, but a bacterial infection called tracheitis. Zayn was given strong antibiotics through intravenous which made him extremely poorly. After a day or so, more blood was taken and then the consultant came again to ask for more blood as they were concerned that his platelet levels were dipping. (By this point Zayn was fed up with bloods being taken and we had to have a therapy dog in to help take Zayn’s mind off of it, along with 7 members of staff to help keep him as still as possible). We were reassured that his platelets were probably low due to the infection and that they would most probably return to normal after the infection had gone.

Peter Lindsay – in his own words

I am 77 years old, a non-smoker, and might have a glass of wine from time to time. I was first diagnosed with ITP in 2015, as far as I am aware defined as having a platelet count of <150. This was picked up on a routine full blood count prior to starting treatment for a fungal infection. Platelet count on my first Haematology consultation was 104. All blood parameters including viral serology were negative. A staging CT scan of neck, chest and abdomen did not show any evidence of pathological lymphadenopathy. Three months later, with no medication, my platelet count was 142.  I was then scheduled for review one year later, and then annual blood tests.

Fast forward to October 13th 2020 when my annual platelets count was 95 ( usually slightly above 100 ). My GP advised me to have an additional routine test within a three-month period. I had had my flu vaccine on Oct 10th, so that may have a slight negative impact on my platelet count.  During the intervening five years I gave little thought or importance to platelets. In my mind, ITP was of little consequence. I did not declare the condition to my travel insurance company, my thinking being, ' my platelets are slightly lower than the norm, so what?'

Dale Gregory – his ITP story

Hi, I was diagnosed about 16 years ago when I was 40 but probably had it quite a long time before that, I just never bothered going to see the doctor about the bruising. I do not do doctors.

I found out because my wife made me go for an MOT at the doc's because she thought my diet was bad (it was pork pie, dripping, bacon etc), after a blood test they found my count was in single figures and thought I had Leukemia!! so gave me a bed in the local hospital and after a few more tests and days in the Cancer ward they diagnosed me with ITP and started me on Steroids. That was a bit of a relief to be honest. 

I stayed on them for a while but suffered side effects so took myself off them one weekend and found my platelets were steady around 30 which apparently was fine. I started having 6 monthly blood tests to make sure it stayed around that number. I did not change anything in my life they said I was fine with 30 so lived with that count, knowing when it dropped, generally when I felt unwell, and again knowing when it returned to my normal because I did not bruise as much. I was told 30ish was my norm and tiredness were the ITP way of life.

In 2013 I had to have a tooth out in hospital, so they put me on steroids for 3 weeks and my count shout up to 100 or so and the tooth was taken out and my platelets returned to 30ish soon after. All was good and I continued to live a normal life, riding my motorbike with the club, and doing everything I had always done, just being careful not to hit my head, and also put up with the tiredness. A year or so after I went to annual blood tests.

My ITP Journey by Paul Stacey

My ITP Journey Like most people, I was accustomed to occasional headaches, especially stress-related episodes. A couple of Ibuprofen usually dealt with them effectively. However, the intensity and location of the headache I experienced one Friday evening in June 2016 was on a completely different level. At the time I thought a couple of tablets would again do the trick. There was no improvement in the morning, and we phoned NHS111 for advice. I was told that it was probably a migraine and was prescribed some medication. As a seemingly fit and healthy Secondary School Head of PE, I rarely took time off and expected to be fine for work on Monday morning.

Unfortunately, the pain had not abated and would not do so for the next 3 weeks. Two visits to my GP surgery followed and a migraine remained the probable explanation. On the first of these visits, I was prescribed Aspirin, which in retrospect could have been very dangerous. I dutifully followed the advice, but it became apparent that the pain was not subsiding, and I was taken to my local hospital. Examinations ensued and it was decided that I probably had meningitis. My employer was informed, and I was given a course of antibiotics. After scans and a lumbar puncture, it became clear that I had in fact suffered a subarachnoid haemorrhage - a brain bleed and a form of stroke. I was rushed by ambulance up to Kings College hospital and spent the next few weeks under their marvellous care. I cannot speak highly enough of the staff there. Unfortunately, my stay was lengthened as I had contracted Clostridium difficile along the way, probably as a result of the antibiotic treatment.

Angela Smith – An ITP Journey

My first encounter with ITP was in 1997.  I was in Northern India with my husband at the time, our travels there were adventurous and filled with the unexpected, so a few bruises didn't really make a big impact.  It was only on the flight home when I found I had mouth blisters and realised the extent of my bruising that I knew something was seriously wrong.   Spending just enough time at home to have a bath, I presented myself to my local A and E.  I was dismayed when they didn't hesitate to admit me, apparently my platelets were undetectable and my iron levels extremely low. It took a few days for a diagnosis and I was referred to as "this week's interesting case". It was suggested that the condition had been triggered by quinine based anti-malarials.

There followed a year of intermittent transfusions and treatments with Prednisolone.  Each time my platelets were raised to a satisfactory level the improvement lasted about three weeks, then my platelets would plummet to below five again.  Then suddenly, they went up and stayed up and I was able to discontinue all treatment. At that point I imagined I was cured, that was the end of ITP for me!

Evan's story – by Caron James

My son Evan was an extremely boisterous 3-year-old little blondie, always on the go, always happy and loving preschool. He woke me up one night with a nosebleed, he had never had one before, so I wasn't worried, it stopped within 5 minutes, so we just carried on. A few days later, he had another nosebleed, but this time, it did not stop. I knew something was not right, so I made an emergency GP appointment, they said children's noses are extremely sensitive and prescribed some sort of cream.

We were also sent for a blood test 'just to be sure' within a couple of hours I took Evan to A&E. The consultant called us in and Evan dramatically vomited blood. The consultant pushed a button and the room was suddenly swarming with doctors, stripping Evan down to his underwear and putting in an emergency cannula, which was very traumatic for Evan. They said it looked like leukemia and my heart stopped! He was covered in petechai and bruises, even more so than the few I'd seen and put down to him being a clumsy boy.

His blood results came back while we were still in the emergency room. His platelets were 2. That is when I heard ITP for the first time, this complicated sounding illness, I'd never heard of. Evan was admitted to the ward and as we passed the playroom, Evan got excited and tried to run. He collapsed and I carried him to his bed. The doctor came in and explained the illness in more detail and said our GP had called in an absolute panic saying his patient has 2 platelets, the doctor said, "don't worry, he's already here". We watched Evan like a hawk and he slowly got less and less responsive. We called the nurses and again my boy was surrounded by doctors and nurses, they gave him fluids directly into his cannula and he eventually came round. To this day that was the scariest moment of my life, it seemed as though Evan was lifeless forever. He was given a blood transfusion and platelet transfusion and we were in hospital for 3 days. We were sent home with a bag full of medication and steroids. I was still trying to process what had happened and tried to educate myself about ITP as much as I could.

 Life with ITP- By Rhona Bowie

More often than not, in order to reflect on something, the event or experience in question usually has to be over and your thoughts, and feelings on the matter finalised. However, I must confess that my feelings on this matter are certainly not finalised, nor am I sure they ever will be. 

Immune Thrombocytopenic Purpura. By now, everybody reading this knows what ITP is. However, at sixteen years of age, when I got diagnosed, I didn’t have a clue. Our bodies attack the platelets that clot our blood, meaning we bleed constantly and freely from everywhere in the body. When it's put like that it seems almost insignificant, merely a trivial cog that has become rusted in the well-oiled mechanisms of our bodies. Although, it’s not quite that simple is it? 

Hospitals have this unique feeling about them, as if time isn't real and nothing seems quite right. Let’s be clear, no one likes spending their time in the hospital, it’s eerie and too big and is riddled with sick people. And in the summer of 2019, I became one of them. 

After undergoing weeks of stress whilst sitting my lifeguard exam, I finally went to the doctors about the weird rash that was covering me head to toe. Within days I lay in a hospital bed, confused and beyond exhausted, with a needle jammed in my arm ready for a blood transfusion that didn’t go ahead. Instead I had to take twenty steroids a day for four days in the hopes of resetting my immune system and to stop my platelet levels dropping below ten.

My 15 year’s ITP story in Portugal… and still counting by Lina Moniz 

I was first diagnosed with ITP in 2005, when I was 33 years old and 7 weeks pregnant with my first child, a baby girl.  After an exceedingly difficult period in which I was put into Intensive Care and began to receive treatment with Prednisolone and intravenous immunoglobulin, with no results whatsoever, my daughter died in the womb at 32 weeks of gestation.  At that time, my platelet count was 3. After that, I stopped medication, but the problem persisted, although in a less severe manner, accounting for two digits.  

And, what next?  

Well, I am Portuguese, living in Portugal and since the beginning, I really had some difficulties dealing with my ITP. Having a scientific education, I really felt the need of further insight on ITP, I was not always able to get to my regular doctor’s appointments. However, I really felt stable over these 15 years and I have been living with a general platelet level way under 50, with some counts of one digit. Only in the last 4 years, I have developed some sporadic petechiae. Most of the time I was the one reassuring doctors that I was doing ok, they seemed to look at it with huge concern and wanted me to restart on medication, which I’ve been declining ever since. In the early years Splenectomy was also put on the table, but since I was feeling not well enough informed about the benefits and risks of this procedure, I also declined it. Unfortunately, I was also advised against another pregnancy.   

Life with ITP - By Shehzma Hirani

I have ITP.

I have lived with ITP for over twenty years, that's half my life. After receiving first class honours at my university graduation in my early twenties in 1999, I noticed an unruly spectacle of unexplained purple bruises sprawled across my body which I ignored with indifference.  However, an over protective mother forced a GP appointment, revealing an over protective immune system, platelets in single figures (average being 150-450), which overnight, led to, unbeknownst to me at the time, a long term diagnosis of chronic ITP. Since then, it’s been my shadow through my training and career as a teacher, walking with me through my marriage and the birth of my two beautiful daughters, and now following me into my forties with a further distinction at university.

I've had relations with a range of treatments including the dreaded steroids (a destructive relationship at an impressionable age where I became unrecognisable inside and out), a splenectomy (I heavily invested in it but it didn’t work out, scarring me for life and leaving me with a lifetime of Penicillin V as a souvenir); I’ve toyed with IVIG, platelet transfusion, Tranexamic Acid, Anti D, Azathioprine (fear of long term commitment), Romiplostim (extremes in behaviour) and Rituximab (the one!).

It’s not been an easy road relapsing often at milestones in my life; writing essays whilst on a drip when training to be a teacher; three months before my wedding day, feeling far from the blushing bride; on my thirtieth in Paris; discovering blood, blisters, blemishes and bruises and requiring treatment whilst pregnant with my second child; during my fortieth when ‘life begins’, or in my case, when it comes into question, yet again. Devastating but I got through it. I had to.

I have long phases of not being well, phases of being well, and phases of somewhere in between. I've recorded every single platelet count, from 2 to 500 plus, and logged every corresponding treatment. I have journaled my journey. I am officially an ITP geek!

My ITP Story by: Ella Sophia Ellis

We can all have a habit of believing we’re invincible in some way or another. In particularly in adolescence, as a young fiery spirited child, full of unscrupulous energy and an innocent sense of the world, I felt this way. Growing up, I lived a pretty cush life, awesome parents, incredible family, great friends and a wealth of opportunities. But at the age of 8, my rollercoaster journey with ITP began, of which I am sharing with you today.  I hope this piece, may provide some candid knowledge of life with ITP, and particularly through the perspective of an adolescent but also offer conjure an optimistic stance on ITP, for everyone to take from.

I vividly remember, most memories as a pre-teen living with ITP. I distinctly can recall, the initial adrenalin rush, of being taken to hospital for the very first time. Directly oppositional to my parents panic stricken faces, contrasted my excitement to have time of school, lay in bed all day watching day-time TV and eat an abundance of snacks, whilst being prodded and poked by perplexed doctors. However, my enthusiasm for a relaxed bed-bound hospital life, quickly dissolved, alongside my rapidly declining platelet count.   At the age of eight years old, I began various courses of treatment, and my extensive bleeding episodes became more frequent. The dwindling moral of doctors, that as a young person I would ‘grow out of ITP’, came more infused with every unexpected hospital visit. By the tender age of 11, I had experienced possibly every symptom ITP, could hurdle at my frail body. Severe 6-hour nosebleeds, purple/red petechiae, continuous gum bleeds and mouth lacerations, and the best part- the beginning of my (Carrie horror-film like) menstrual cycle- the joy! Not to mention, the questionable extreme- bruises, that brought frequent, uncomfortable, conversations with schoolteachers, friends-parents, that left me floundering for an articulation of a disease, I did not even really understand myself. Meanwhile, I watched my parents emotionally struggle with the heart ache of being worried for their child. This ultimately hurt the most. I believe when you go through the motions of illness, even as small child, the power of your parents’ (loved ones) feelings, is deeply affectual. I tried my upmost, to keep upbeat, happy-go-lucky Ella, that had always been, previous to ITP, but my transfer to Birmingham Children’s Hospital after my local hospital became too puzzled by my condition, really hit a core.

A sixty-five year acquaintance with ITP

It began one March evening in 1955. At about 8.00 p.m. petechiae appeared on my arms and legs, followed by bruises, blood blisters on my tongue, and passing blood in urine. Mum set off on the long walk to the phone box to call for medical help while a neighbour supervised me and my younger sister. Our G.P. visited a few hours later, took one look and pronounced that I had Purpura. It was the first time I heard the term, but it seemed apt as by then purple seemed my dominant colour.

The next morning friends walking to school were surprised to see me entering an ambulance, as was Dad as he turned the corner returning from his night shift in the steelworks. So began over four weeks in the Children’s Hospital being treated with cortisone.

I have vivid memories of the enforced bed rest; of watching the four occasions a syringe needle was forced  into the marrow of my hip and the discomfort as the contents were withdrawn; daily blood tests and the pricking of thumbs and earlobes to absorb blood onto a circular filter paper for testing; and the senior doctors pinching the bruise free areas of my torso so that their juniors and students could watch the new bruising appear. The hospital was not child friendly by today’s standards. I was allowed to sit up to eat but otherwise was expected to lie down in bed which was difficult for an eleven year old who did not feel especially ill. Parents ‘ visiting was 6.00 to 6.30 p.m. and strictly enforced. Doors opened at six and there was a two-minute warning bell for parents to say goodbye before visiting ended.

Weeks later I was at home, overweight, and moonfaced as a result of the cortisone treatment that had been administered, friends needing to look twice before recognising me.

Some doctor had told my parents that I should not participate in sport because of the danger of a recurrence of the problem. Fortunately our family doctor had the view that I should do whatever I chose to do and enjoy my childhood.

In March the following year ITP returned and led to a hospital stay of five days before my blood returned to normal. Two days later I was running in the school cross country race for my age group.

In the following years I ran middle distance track races, marathons, then some ultra marathons (55-57 miles), instructed at skiing, and canoeing, and dabbled at sailing, windsurfing, and waterskiing.

My ITP Story.

By Janet Millard

My name is Janet Millard.  I live in West Sussex and at the time I became ill I was 63 years old. My story starts in July 2017. I had been for a routine blood test at the GP Surgery on a Thursday in early July. The next day I woke to find a strange rash across my chest, but as it was a very hot day, I put it down to the heat.  As the day went on the rash progressed to other parts of my body, including legs and arms.  Baffled but not unduly alarmed, I carried on in on as usual until early evening.  On using the loo, I noticed I was losing blood, quickly followed by coughing up some blood.  Now the rash had progressed to round my neck and I was starting to feel unwell.  My family took me to the Accident and Emergency Department, where they diagnosed ITP.  My platelet count was down to 8. When the doctors looked at the blood test, I had done the day before, the platelets were in normal range, so they had literally dropped over night.

I spent the next week in hospital as my platelets dropped to zero on the Saturday night. I had a severe nosebleed that lasted for twelve hours and ended up being anaemic.  The steroid treatment I had been put on wasn’t working, for three days my platelet count refused to rise. I had three platelet transfusions, but my immune system kicked them out as fast as they went in, the doctors said I was like a leaky sieve.  By Wednesday my platelet count had struggled to 4, so It was decided to try a drug called intravenous immunoglobulins. Thankfully this worked, my platelets started to rise and by the following weekend rose to 26, the bleeding had stopped, and I was allowed home.

I had regular checkups at the haematology department, and the steroids finally kicked in and my platelets were now in normal range. After three months the steroids were stopped, and the platelets remained in normal range for four months.  I woke one morning to find bruising and a rash appearing, but thankfully this time no bleeding. The platelet count was first zero, then 17 followed by 26 before I had any treatment.  The platelets had started to rise on their own accord, so the doctors decided to give no treatment but monitor me closely. The platelets kept rising slowly and five months later in June 2018, they had reached 114.