ITP Awareness Week 21

Living with ITP - common questions and concerns

Join us as we celebrate Sport Purple for Platelets Day and Global ITP Awareness Week with the presentation of the ITP Insights webinar, “Living with ITP: Common Questions and Concerns,” on Friday, 24th September from 7:00 PM (BST). This webinar will include a panel discussion of ITP experts, co-hosted by three of the global leaders in ITP patient education, support, and advocacy: ITP Australia, ITP Support Association UK, and PDSA. From updates on COVID-19 & ITP to shared decision making to common ITP questions, our panel of world-renowned ITP experts will cover a myriad of topics important and pressing to the ITP community.


ITP Awareness Week 2021

Whats on!

North East of England ITP Patient Support Group - Monday 20th September at 7pm.
To kick off ITP Awareness Week we are pleased to announce the launch of the North East of England ITP Patient Support Group with their first Meeting on Monday 20th September 2021 with a 7pm start. The meeting will take place using the Zoom Video conferencing system. We will have Dr Vickie McDonald from Barts and Clinical Nurse Specialist Emily Stewart on hand  to answer any patient questions. To register (free) go to North East of England ITP Support Group.
As with all of our Support Group meetings they are open to all.

Shared Decision Making Document for the management of ITP - Being launched on Tuesday 21st September.
The ITP Support Association in partnership with the UK ITP Forum is pleased to announce that the two organisations have come together to produce a document designed to help and support patients during their ITP Journey. Electronic copies of the document will be available on 21st September via our website and social media, printed copies will be available shortly after.

Paediatric ITP Support Group Meeting - Wednesday 22nd September at 7pm.
The ITP Support Association is pleased to announce as part of ITP Awareness Week, it will be hosting the Imperial College Healthcare Trust Paediatric ITP Support Group Zoom meeting at 7pm on Wednesday 22nd September 2021. We will be joined by Dr. Nichola Cooper and members of her team who will be on hand to answer any patient questions. To register (free) go to Paediatric ITP Support Group Meeting.

For the end of ITP Awareness Week we are working on a joint event with some of our internationals friends, keep checking our website and social media for details.

Making the right choices in ITP management and care


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

To download the English Langauge 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.

As part of Global ITP Awareness Week (20-25 September), the ITP Support Association and the UK ITP Forum are pleased to launch Making the right choices in ITP management and care – A shared decision-making toolkit for patients.

The toolkit is a response to the results of a patient survey made by the ITP Support Association in 2020. The survey highlighted inconsistencies in the diagnosis and management of ITP – which can negatively impact patients.

It defines what best practice collaborative decision making in ITP management and care looks like and provides a practical guide to help patients, carers and healthcare professionals achieve this.

This material allows the patient to develop knowledge, skills, and the confidence needed to make managed and informed decisions about personalised health and care. It will ensure that more ITP patients are on care plans that appropriately suit their lifestyle and individual circumstances, improving their quality of life – which can be severely impacted if an individual is placed on a suboptimal care plan.

This toolkit is groundbreaking in that it is one of the first haematological conditions to develop specific guidance in response to National Institute for Health and Care Excellence (NICE) recommendations for shared decision-making practices to be implemented across all conditions.

The toolkit is endorsed by the Royal College of Pathologists, Royal College of Physicians, The British Society for Haematology, and the Genetic Alliance UK

The ITP Expert Working Group and partners are calling for this best practice guidance to be adopted across all healthcare settings in the UK.

Professor Adrian Newland, Chair of the ITP Support Association, said

“Following our recent patient survey, the ITP Support Association identified significant disparities between patient experiences of care and whether individual preferences were considered in care management plans. We decided that we should bring together a group of haematologists with a particular expertise in ITP to develop this toolkit that, we hope, will empower patients to hold collaborative and honest discussions with their clinician which in turn will result in better outcomes and quality of life.”

Dr Quentin Hill, Chair of the UK ITP Forum, said:  

“The ITP toolkit is an excellent introduction and companion document to support and empower patients.  It guides them step by step though the journey of diagnosis and medical care.  A collaborative approach is more rewarding for patients and clinicians, and I have no hesitation in recommending that the ITP Toolkit is given to all patients at presentation.”

Dr Sue Pavord, Consultant Haematologist, Oxford University Hospitals and ITP Expert Working Group member said:

"It has been a real pleasure working with patients and the ITP Support Association in preparing this Toolkit. Mutual understanding and joint decision-making is crucial when planning management which is suitable and acceptable to the individual patient. I encourage all NHS trusts and haematological teams to review the Toolkit and refer to the guidance when deciding on treatment and care with an ITP patient.”

The ITP Support Association and members of the ITP Working Group are available for interview and to provide further comment.

Contact: This email address is being protected from spambots. You need JavaScript enabled to view it. 07535 605467

“I wouldn’t have my children without plasma donors” says Manchester mum for Global ITP Awareness Week


“I wouldn’t have my children without plasma donors” says Manchester mum for Global ITP Awareness Week

A MUM is calling for more people to donate plasma for Global ITP Awareness Week (September 20 to 24) after donors enabled her to have a family.

Danielle Morley, 37, of Radcliffe, developed the blood disorder immune thrombocytopenic purpura (ITP) during her first pregnancy.

Her immune system started attacking and destroying her own platelets, the tiny cells that help the blood to clot, putting her at risk of serious or even fatal bleeding during her three pregnancies.

She was treated with immunoglobulin, a medicine made from donated plasma. There are 11 plasma donor centres in England, including one in Plymouth Grove in Manchester, just south of the city centre.

Danielle, a sales director, has received more than 50 infusions of immunoglobulin. She was diagnosed with ITP during her first pregnancy through a routine blood test.  

ITP can happen after a virus, vaccination or certain medications, but for most people the cause is unknown. 

Some people have no symptoms. Common symptoms including pin prick blood rashes, bruising, nosebleeds, gum bleeds, black mouth blisters, fatigue, heavy periods.

Danielle received intravenous immunoglobulin every three weeks during each of three pregnancies, which helped calm down her immune system and stop it attacking her platelets. She has also received it on several other occasions when the illness has flared up outside of pregnancy.   

Danielle said: “When I was first diagnosed they said my platelet levels would continue to drop and there was a risk of internal bleeding which can ultimately be life threatening.  

“This is why supporting plasma donation is such a big thing for me. The only reason I was able to continue having children is they knew immunoglobulin worked for me and it would help me boost my platelet levels straight away.  

“I just wouldn’t have all my children without immunoglobulin, made from plasma donations.”

Danielle’s bouts of ITP have occasionally been serious. She had tonsilitis which developed into sepsis, can be fatal.  

“Immunoglobulin has been a life saver,” she said.  

“The people who donated are very selfless. It’s really wonderful that donors come forwards.”

Mervyn Morgan, CEO of the ITP Support Association, said: “Every year, ITP Awareness Week serves to highlight this rare autoimmune bleeding disorder which affects around 5,000 people within the UK.

“Treatment was by steroids which was not always successful, or a splenectomy.

“Thankfully today, there are many more options including immunoglobulin derived from plasma donations.

“ITP patients, and other patients with a variety of autoimmune conditions, who rely on immunoglobulin, are indebted to the many thousands of donors who donate their plasma for the treatment of these conditions.”




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.

Read more ...

Heartaches and Miracles by Greta Burroughs

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.

Read more ...

G’day from Australia! By Danielle Boyle

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).

day_of_diagnosis.JPG   6_weeks_-_steroid_moon_face.jpg

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

Read more ...

Liam Burns’ ITP Journey

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.

Read more ...

‘Chronic illness is a lonely thing’ by Karen Tomkins

‘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.

Read more ...

Gemma Ankouri – Zayn’s Story

Gemma Ankouri – Zayn’s Story

Zayn Ankouri‘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.

Zayn was well enough to go home after a few days with his cannula still intact. We had to return daily for antibiotics and blood tests. Other parents will sympathise; this was not an easy task. By now, Zayn knew what was coming and got himself into such a state having bloods taken- it was heart wrenching watching him go through this. We tried everything from distractions, sweets, toys, but it really didn’t help much.  Eventually with time, we spent time with the fantastic play team at St Richards; Kerry and Shelly. They worked so hard to help Zayn with the process of taking his blood. They made games up and explored the equipment that was used.

The fantastic consultant, Dr Sharp, we were assigned told us about ITP and explained that this was what Zayn had, what it was. But it was acute at the moment - it could go away. A lady from the research team also gave us some information and asked if we were happy for them to access Zayn’s notes, to help them with this rare condition.

As parents, this was a scary time for us. We had never heard of this condition and we were worried for our son and his future. We went home and researched on the internet for hours. What would ITP mean for our son? What would need to change in his life? It was a very unsettling and worrying time for us as parents and we would watch Zayn constantly.

Read more ...

Peter Lindsay – in his own words

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?'.

On November 25th 2020 I was admitted to hospital with acute urinary retention and UTI. I was catheterised,( two attempts, ouch, ouch), and there was some amount of bleeding around the site of the catheter but there was no haematuria. A few hours later blood test results came back and my platelet count was 6. This all happened in the walk-in A&E department and the duty medic seemed less perplexed once I had quickly offered my ITP history. Whilst I am much wiser now, thanks to the ITP Support Association, I had not linked infection with a possible drop in platelet count.

I was started on a course of Co-amoxiclav to deal with the infection,(the previous four days leading to admission I had been on Nitrofurantoin), and Prednisolone 60mg daily for the ITP. On Dec 4th my platelets were 342 decreasing to 122 on Feb 9th, by which date my Prednisolone dose had been tapered to 10mg per day. This was back around my normal platelet count.

I had my first Pfizer jab on Jan 23rd and there seemed to be no effect on my weekly platelet counts of around 120 until Feb 16th when they dropped to 22. A few days earlier, on Feb 12th, almost three weeks after my Pfizer jab, I woke in the early hours of the morning lightheaded, shivering, aching all over and had had a night sweat. The following day I was fatigued, no appetite, a headache but no fever. The following day I was almost back to normal. My suspicion was that this dramatic drop in platelet counts was a reaction to the Covid vaccination. My haematologist treated this episode as a relapsed ITP and started me on a four-day course of Dexamethasone 20mg with a view to proceeding with Rituximab if I relapsed again. My platelets were 220 after the four days on Dexamethasone. A scheduled bone marrow biopsy around this period showed nothing abnormal. My second Covid jab was brought forward in case I had to start Rituximab therapy.

I have had no further medication and my platelets have now, August 6th, settled to levels between 100 to 120 with a drop to 74 around the time of my second Pfizer jab, and 69 after a heavy cold. 

In summary, I have asked for my story to be included on the website as an illustration of how infections, vaccines and viruses might affect platelet counts. I my particular case, my normal platelet level seems to be just above 100, with a likely negative impact due to future vaccines, infections and viruses, such as the common cold. I will be quick to deal with future infections and try to organise a platelet count near such events. I will be taking my ITP more seriously in the future.

Dale Gregory – his ITP story

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.

Read more ...

My ITP Journey by Paul Stacey

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.

Read more ...

Angela Smith – An ITP Journey

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!

Read more ...

Evan's story – by Caron James

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.

Read more ...

Life with ITP- By Rhona Bowie

 Life with ITP- By Rhona Bowie

Rhona BowieMore 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.

Read more ...

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

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.   

Read more ...

Life with ITP - By Shehzma Hirani

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!

Read more ...

My ITP Story by: Ella Sophia Ellis

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.

Read more ...

A sixty-five year acquaintance with ITP - By Dave Bagshaw

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.

Read more ...

My ITP Story - By Janet Millard

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.

Read more ...

Having ITP has saved my life - By Pam Brookes

Having ITP has saved my life.

By Pam Brookes

I know, it sounds ridiculous doesn’t it, but it’s true!

I was almost 57 and according to my husband, I was a few years into my menopause when I was diagnosed with ITP in May 2017. Sorry chaps, it’s one of those stories but please stick with it.

I had been to the doctors earlier in the year because I just felt so tired. I was crying at nothing and was exhausted all the time. My Doctor started a series of tests which all came back normal, reassuring but frustrating. Then I had a blood test as part of a starved glucose test.  A Doctor phoned me later that day and told me that my platelets were at 7, and I must go to A&E, they were expecting me and to take an overnight bag. At the hospital the Doctor tried to explain what 7 meant, told me that I didn’t need to stay in and made me an appointment for the Haematology clinic.  

Three day later, I was told I had ITP. What? Never heard of it. We had a long chat and I was given some reading material. It sort of made sense, the fatigue, the exhaustion but I only had one bruise, although it was odd to bruise from carrying a shopping bag with a loaf in it.

I started where everyone starts, steroids, 70 mg. I piled on so much weight but at least they were working. However, my platelets kept crashing down into single figures every time the dosage was reduced. By the November it was decided that I would start Romiplostim. Because of my weight, I had 5 injections every Friday. It was less painful to give myself 5 injections rather than having them all in one syringe.  The injections worked initially but then I dropped back into single figures. Eltrombopag next. Again, it worked initially but then back down to 7 so back to the injections. I did have the odd week over 100 but mostly I was below 30.

It was now June 18 and I was bouncing along in single figures. That was when the operation to remove my spleen was first mentioned as the drugs just weren’t getting my numbers up to anything near a safe level.

Read more ...

I Have ITP- but it doesn’t Have Me by David Farrow

I Have ITP- but it doesn’t Have Me.

By Dave Farrow

I developed ITP and neutropenia (loss of some white cells) way back in 1993.

Over the years I’ve had most treatments available including a splenectomy which did not work. Twenty-seven years later I still have the two conditions lurking in the background somewhere but thanks to treatment with various doses of Mycophenolate and a caring Haematologist that I can talk to, my counts have remained stable for several years now.

However, I have had to help myself too. In the early days I was stressed out and often looking for new bruises that were not always there. The large doses of prescribed steroids were driving me crazy and my loss of white cells made me vulnerable to infections. I knew that I had to somehow take charge and develop some coping strategies. I thought It time I shared some of these with others.

I was not feeling well and had been in and out of hospital during my first year, but I thought it important to learn all I could about the Immune system and the enemy within that was sometimes attacking my platelets. The immune system is complicated, so I tried to keep to the basics at first. I sought Information from books and explanations from health professionals. I never really met another person who had ITP in those days. The ITP support organisation didn’t exist in 1993. I was one of its early members. Later it became a great source of information and of course much more is known about ITP nowadays.

At first, I was stressed out by it all but after a while I thought it best to become a patient, patient! As all patients know we spend a lot of time waiting to see Doctors and others. I go prepared with something good to read. I get to know staff and other patients. I became patient about results too. I learned not to expect rapid, long lasting, positive results from treatments.

Read more ...