If you have an ITP Story that you would like to share please email This email address is being protected from spambots. You need JavaScript enabled to view it.. We can share on this website and in our quartily journal The Platelet.

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.

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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.

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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.

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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!

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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.

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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.

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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.   

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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!

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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.

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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.

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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.

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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.

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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.

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