The Seven Stages of ITP

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How does it feel to be told that you will likely live for the next 25 years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?

How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age? – That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?

The answer to all these questions is this… fine!

Because by the end of that speech, you’re in shock.  You think to yourself…. Yes, yes, yes that is all very well and good for someone else, but none of that will happen to me (Even though at that exact moment it IS happening to you!!)  That is the beauty of shock and denial – The first stage of having ITP

Shock & Denial, the 1st Stage of ITP

When I received my diagnosis, I never felt any denial.  I told everyone about having ITP.  I was happy to discuss it and I felt ok about the diagnosis.  I thought ITP was actually quite interesting and told myself, ‘if you’re going to get anything, it may as well be something weird and different.’

In the beginning, I was the perfect patient.  I did everything I was told.  I stopped drinking, I set an alarm to take my medication, I went to bed early, I went to every appointment, I nodded and said yes to everything, I went where ever I was sent, and did what ever needed to be done.  I was incredibly compliant.  This was my denial.

I had admitted to myself that I was sick, yes but I secretly knew I could do something to make it stop.  I told myself that if I was really, really good, I would be able to reverse it.  I thought, I’m different to everyone else, it will be different for me.  Denial.

Not for a very long time, perhaps years, did I realise that ITP was not going away.  I still get a shock every now and again, thinking…. Gosh, is this still going on?

Guilt, the 2nd Stage of ITP

When my ITP did not go away, things started to change.  This was when I started to feel guilty.  The haematologists at my hospital had told me that everything about autoimmune disorders pointed to it being a life style disease.  I started to tell myself that I had done something to trigger getting ITP.  Had I caused this?  I became convinced that I had given myself ITP.

It is strange how you can feel guilty towards yourself.  I started to feel guilty towards my own body, like I had let myself down in some way – I just could not figure out how.

Feeling guilty is incredibly destructive because it can lead you to compare yourself to those around you.  As you try to pin point what you had done to cause ITP, you start to think about your actions in comparison to others.  Had I drunk too much while traveling around Mexico?  If so, then how much did everyone else drink?  Surely I was not the drunkest woman in Mexico City – Was I?  Why didn’t everyone else get ITP too?  Why didn’t something bad happen to that other person?  If I am guilty – then why aren’t all of those people guilty too?  It is a bad place for your mind to be.

Anger, the 3rd Stage of ITP

Comparing your life to another persons life is the easiest way to feel angry.  Particularly if that person is a raging alcoholic + has perfect liver function +  and has 0 autoimmune disorders = Anger.  I have compared myself to smokers, drinkers, criminals, people who eat McDonald’s, people who drink coke and take drugs, and people who party hard and are stressed at work.  It wasn’t pretty.  I was angry.

Chances are you are misdirecting your anger in a number of stupid ways.  You may feel angry at your doctor’s, thinking that they have let you down in some way, or for not helping you make a long term plan.  You may feel anger towards your family and friends, those who are closest to you and who are trying to help the most.  You may be angry at yourself for having such a frustrating body, or for making stupid choices when you where young – yes, I ate a lot of microwaved food too.

Dealing with anger can be very difficult, particularly if you don’t even know you’re angry.  You need to realise how you feel and pin point the source of your anger.  There is no good way to move through anger until you realise that that is how you feel.  If you don’t know you are angry then you cannot start to remind yourself that feeling angry is a huge waste of time.

Bargaining, the 4th Stage of ITP

Bargaining is the hopeful stage.  Mostly, it looks like late night googling of obscure cures for ITP.  Bargaining is the process by which you think that you can exchange something for your health back.  Bargaining might sound stupid to others, but it is important to remember that the process of bargaining, deciding what you would and would not give up in return for your health, is actually an incredibly positive process.  Bargaining is a form of hope.  It is not to be treated lightly or made fun of.

While bargaining can often be confused for denial, the difference is that bargaining offers the ITP patient a sense of agency and control.  Bargaining is my favourite stage for just that reason – it offers hope.

I am very good at bargaining.  I think that this is the stage that I have spent the most amount of time in.  I often tell myself that I am just one simple step away from solving the whole ITP / Autoimmune mystery.

Perhaps you have bargained gluten one week and dairy the next?  Yes, I have done this too.  Perhaps you have decided that you’ll never drink….alcohol / coffee / caffeine ever again?  Or you’ll meditate everyday and sacrifice your sleep in for a cure?  You promise to practice new breathing techniques and buy lots of different kinds of tea?

You may or may not sound crazy at this point.  Your friends and family probably can’t keep up with all the changes you are trying to make in your life.

Bargaining can be fun and hopeful, but it is rarely a sustainable mind frame (otherwise it would be the last stage not the fourth – Obviously!)  Most people get over bargaining naturally, as they realise all their efforts are coming to nothing.

Depression & Loneliness, the 5th Stage of ITP

This depression can come on at any time, but for me it tends to arrive straight after bargining, when I realise all my efforts of resource trading have been a big waste of time.  This is the moment when I don’t want to try anything new anymore, I want to whinge and be a pain in the arse and wallow and feel sorry for myself.

This is the point when you feel like everyone is different to you.  This is the moment when it seems like no one understands.  Your friends and family are probably still catching up to weather or not you are eating gluten anymore.

It feels like everyone around you is sick of hearing about your illness and that life has moved on while you’re still dealing with it – Everyday.  This is the moment when you really need to get online and read funny articles like this one.  10 Things you Should Never say to Someone with ITP.  This feeling should not last too long, but if it does, think about seeking medical advice to process how you’re feeling.  Talking to professionals does actually help.

Reflection, the 6th Stage of ITP

This is the one that I am in right now (Refer to current article as evidence).  Reflection gets me thinking and looking for others to talk to.  During this time I want to compare notes with other ITP people, ask questions and figure out what is really going on.  My initial reflection stage lead me to start this blog in 2012.

I am always thinking about how I have been changed by ITP and how my perception of the disorder has grown and developed over the years.  In the beginning I took ITP very seriously.  Now I am a lot more relaxed and at ease with it all.

I feel like I am starting to refocus my energy towards ITP at the moment, and am enjoying meeting more and more ITP patients online.  It’s these stories that always cause a moment of reflection on my own journey.  Often I am thankful that I have learnt so much and feel more in control now than I ever have.

Acceptance, the 7th and Final Stage of ITP

I have a strange relationship with this stage of ITP – I have felt acceptance a few times over the years but it has not lasted long.  When I find myself accepting ITP into my life, I start to worry about what that means.  I get nervous that by accepting ITP, I am quitting or giving up.

If I accept this, am saying that this is good enough for me?  I worry a lot about acceptance, because I don’t want to be happy living like this, I want things to be better.  If I accept this, will I stop looking for a cure, I will stop wanting a cure?  I am not there yet.

This is the moment when I am often flung right back to the start and I begin the journey all over again.  I think I have been through all of these stages three or four times over.  They are different every time I move through them, but each stage never lasts.

How has your experience of the ITP journey been for you?  Have you been through anything like what I have?  Or has your journey been completely different?  Please share in the comments below.

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

38 thoughts on “The Seven Stages of ITP

    Jenna says:

    My daughter was diagnosed when she was just 2 years old. I appreciate your stages because she’s too young to go through those kind of emotions but I’ve been going through them myself. The one I connect with most is the specific way you explained your denial…I’m cooperative, informed, I document everything…clearly I’ve embraced it!…but no… cooperation and acceptance are very different.
    We’re 2.5 years in with zero success with treatment but the best part of this crap is my daughter…the ‘sick’ one…brings me back to reality because she’s just fine…’my blood just doesn’t work quite right’.
    From the mouth of babes I guess. Thank you for your thoughts…they’ve helped me with finding perspective in our reality.

    • Meg says:

      Jenna, I am so glad that this post connected with you and what your family is going through. Your daughter sounds like Buddha! She should be writing posts for us all! Good luck, and let us know how she goes.

    Padma says:

    Dear Meg, after reading this I cannot but wonder that I am you ! I have passed through all the stages you have mentioned, but now i have one foot on depression and another on finding new cures. I very well understand that I will die with ITP , but that doesn’t stop me from trying acu pressure to boost my immunity, meditation to calm my nerves … You name it, I am trying it. My memory is fogged – the doc calls it steroid induced dementia – the fancy name does nothing to improve your condition – I wonder whether i am going crazy. I would like to ask you whether we can excercise , as I understand that platelets are involved in muscle building too. Will excercise make me worse? I am always tired, at present not on steroids -though platelet count is 70000, gum bleeding persists. Will my platelets drop to dangerous levels as before if I stop steroids?
    What peeves me is that you are damned if you take steroids and equally damned if you don’t. Wonder why no research has progressed in finding a cure. At present, as in the 50s, the cure is worse than the disease.
    Thanks for writing your observations, it will surely help the newbies.

    Rosemary Sharon Woodruff says:

    I am a mother….of a son, age 36, with ITP. We are in our 4th year….spleen removal…etc……he is maintaining….but that is all…..thank God for that. As a mother….family member…I assume it is the same for all close family members….we go through the same processes as the patient…..all of it….and some more than others…….denial is a close acquaintance of mine…..and anger…..guilt….and bargaining…….for a long time….it was denial……my son….the one WITH the disease….does way better than I do…..but then…I am his mom. I kept him safe….protected him….provided him with the best medical and dental care in the world….almost….and yet…..I can not fix this. Kisses and hugs have had little effect this time……and love just goes so far. Mostly …..any more….I rely on Prayer…..God alone is in control now….and we both…..are facing this fact……so….I may not have ITP in my own body….but i HAVE ITP.

    Barbara says:

    Basically stumbled upon this while searching for information to help with medical condition.
    My brother was Dx’s at age 7 with ITP in the very early 60″s . No computer data banks, Drs and staff were tireless in their search to help him. He was hospitalized at Columbia Presbyterian, NYC. I remember my brother was able to talk on the phone to one other child, a girl who was also hospitalized in California. Being a child he was just happy there was finally another child .. like him. Stuck for months in a hospital.

    For all we think we know.. we know very little and most advancements are made when better diagnostic tools come to the front-line. Same Drs. followed my brother well into his twenties.. he has been in remission for decades now. Why? No answer. He is still monitored. He will be 60 next year.

    10 yrs ago I hit my own medical wall. Not ITP, another systemic, chronic issue. My daughter at age 11 had a 1st medical ‘event’.
    Perhaps because of being so young and Living along-side brother, in hospitals with him, protective younger sister.. no he did not like that. My view, acceptance.. of twists and turns in life is more… okay this is what it is… now let’s “live with it”. For myself, just as with my brother… some relief came with Dx.

    It just really did give our family pause and then such immense relief.. when at age 7, my brother was found not to have Leukemia. So ITP .. my mother taking the train after a full day of work to give direct blood transfusions. (Myself handed over to relatives to live, age 6 to focus on my brother) It is just what needed to be done.

    Life experiences shape who we become.
    I worked with Special ed and special needs students. Some born with medical complications who passed early in life. Some never had the ability to walk, dance, sing… so while chronic condition was not on the “A’ list of wants…, I remember that I have danced and sung. In the relative scope I am fortunate and my brother was fortunate.

    ITP can and does go into remission.
    I wish everyone well.

    Sometimes I ask a Dr., especially ones in areas dealing with patient in chronic pain, etc.
    Why did you pick this area of study? Often it was sick relative. Seeds planted early.

    Turn stumbling blocks into stepping stones. Please know that condtions can go into remission and Drs. are not always sure why.

    Kirsty says:

    I’m glad I can across this as it pretty much sums up my last year.

    I would like to add the duck effect to that. Calm on top but paddling like anything under the surface. Many a time have I come out of a consultant appointment and felt a range of emotions and sometimes helplessness. After being ill, Drs not knowing and the making an emergency appointment at drs because of rash, gum bleeding and bruising I was absolutely terrified. Had blood test and rushed into hospital with a count of zero I was in complete denial. I was put on a ward with people who couldn’t do things for themselves and needed help.

    My feeling was if all your doing is giving me tablets and telling me to rest ‘in bed’ I could do that at home and I felt like I was using up a bed that someone worse off than me needs. After a couple of days of hospital the drs saw it my way and thought it was safe enough to go home. The hardest thing was to tell my 5 and 2 year old that I was very tired and needed to rest. Within 3 months I was of 100mg prednisolone to zero woohoo. Was told the chances of this happening again was pretty much zero. 2 months later I had symptoms again and relapsed I have now been steroid free for 3 weeks but told relapse is probably going to happen. I’ve finally accepted this but if I relapse again I’m sure this process of emotion will start again.

    I think it’s just accepting that it’s something I can’t control and others around you feeling helpless to. It’s important for the family and friends to remember being there is the most important thing even though you may feel your doing nothing you most definitely are 🙂

    Cari says:

    Thanks Meg,
    I’m just finding your blog now. I was diagnosed the summer of 2009. I have spent the better part of the last 5 years trying EVERYTHING under the sun. Denial. I thought I would have this solved by now. I thought I would have made all the lifestyle changes necessary to lessen my daily stress. I am convinced if I could just go away to a SPA for a year…I would be cured! Denial. Your words have hit home big time. I cried…your words are proof that I’m not alone in this. It’s nice to know there is someone else out there going through this and having the same thoughts feelings I’m having.

    I’m still moving through the stages one step forward two back at times. Last summer I had internal bleeding due to a ruptured ovarian cyst. My platelets were at 3 my hemoglobin was at 4 when I was airlifted to the ER. I had a spiritual moment (near death?) in the helicopter…this is what I learned. We will die when it is our time to die. Having ITP does not mean we will die sooner than the healthy next door neighbor, for all we know they could go in a car accident.

    ITP has given me many gifts. A very good reason to say “NO” to things I really don’t want to do. The incentive to simplify my life. The appreciation for the days I feel good. On the days I don’t feel good I try to remember I could feel worse. The ability to live in the moment knowing how quickly things can change.

    It’s nice to have met you. I look forward to hearing and sharing more.

    nicole says:

    Why haven’t I come across your blog during the onset of my unique disease? I call it “unique’ because it’s after explaining everything I know about ITP that people get to know about it.

    I was diagnosed with ITP in 2008. I was hospitalized thrice. Thank GOD no transfusion was needed! We’ve tried different steroid medications–prednisone, methylprednisolone, cordex. Because of my long exposure to steroid medication, and my platelet was a bit clingy to steroids–each time my hematologist would taper my dosage, my platelet count tapered itself too. Almost a year into steroid medication, I developed an asceotic necrosis in my left hip joint. My left leg is now 1-1/2 inches shorter than my right leg. I’m just good at concealing it.

    We shifted to danazol ladogal to also suppress my menstrual cycle…every platelet counts, right? I had that medication for nearly three years. Then my body stopped responding. My hematologist had me undergo h.pylori test, and I tested positive. So I took antibiotics for two weeks and shifted to neoral at 200 mg per day. It lasted for 6 months as my body stopped responding again. I got so depressed. I felt like dying. What made that feeling worse was my hematologist told me to stop taking any medication. what? are you crazy? i really wanted to scream at her.

    It will be on the 23rd that i will be one-year free from medication. My platelet count has continued to increase. my platelet count as of june 9, is 70000. I have gone through the different stages, believe me, I was a total wreck. Prayers have kept my sanity through these years. I have learned to not let stressful situations get the worst of me because stress really plays a huge part in our healing.

    In as much as I pray constantly that this will be a lifetime free from medication and a lifetime of platelet count at above 50000, I have constantly prayed for total healing for all ITP patients like me. let us try to live like we don’t have ITP. let’s make the best of what we have. let’s live life to the fullest!

    GOD bless us all!

    • Meg says:

      Nicole, thanks so much for your comments. You are not the first person with ITP to respond positive to h.pylori. So much so that I am currently researching and writing about it now. Please update us on how everything goes. And good luck.

    Saurabh says:

    Nicole, good to hear about your positive recovery. I hope and pray for all ITP patients that they may recover from this crap disease. Recently I have found that my mother is suffering from ITP. She will get discharged from hospital today and she is on oral steroids.
    Her age is 62 years. Since last 3 days she has maintained a platelet count of 25000. I was constanlty googling about any cure for this disease but my heart sank when I came to know that it has no cure. I was in tears and since then I am constantly praying for my mother to respond well for the therapy with proper platelet level and without any relapses.
    I hope and pray that she may spend a good quality time with family for coming years and I hope ITP may not reduce her life expectancy.

    I pray for all ITP patients and I hope that someday a proper solution for this disease may be found. Amen!

    Brandy says:

    It’s crazy reading through all these emotions and remember how I felt through all of them!
    I was diagnosed when I was around 12 which is a strange age since most kids are younger or you get it when you’re an adult. It wasn’t easy going through high school because being a teenager was already enough and then to throw this in with it, yikes!

    Once I was 18 though, I started to read books and take charge of my own life vs parents making all of the decisions. I started to notice a bit of a difference with it but still they would always range around 20,000 – 30,000.

    it wasn’t until I found yoga in Infrared heat that my platelets boosted up to 60,000 and haven’t been lower then that since! Most of the time I do forget that I have it but reading some of the things you say I am reminded of how happy I would be to tell that I’ve done into remission (I’m sure thats a dream for us all)

    Glad I found your blog!

    Rachel says:

    My daughter has itp since she was 3 years old I just wish that there was a cure for it because they have a cure for everything else they have not been stable for almost 2 years now the doctor had told me that she has the chronic case of it. this is so frustrating

    Barb says:

    I have had symptoms of low platelets since first hemorrhage at age 7- 60 years ago! Many bleeding crisis but never a diagnosis until two weeks ago. Finally an answer to some problems. Instinctively I’ve stayed away from aspirin, ibuprofen, & other products affecting clotting. So glad to find info and help. Thank you Dr. Levine, (hematologist) for doing the tests to confirm this condition. Hoping the tx can restore some health issues. I am looking forward to obtaining information from this site.

    • Meg says:

      Wow, That is such a long time with no answers. I thought finding out I had ITP was terrible news, but now i think not knowing would have been worse. I’m so glad for you Barb that can finally get info and Help, welcome to the family!

    Amy says:

    This is the most amazing article ever. I am 40 years old and was diagnosed at nine and this article just made me feel like I’m not stupid and not Kris. Thanks for this is the most amazing article ever. Thanks for writing this!!!!

    Carrie says:

    Thank you for taking the time to write this! It helped so much to realize that what I am feeling/going through was the same as others. I was diagnosed about 10 years ago and I think I have gone through all of these stages multiple times. I think one of the most frustrating things is the lack of understanding of others that I deal with on a daily basis. I am always tired and afraid of getting run down while trying my hardest to avoid others that are sick. I am thankful that I have a wonderful hematologist that listens and has learned what works. My mother has ITP also, along with Lupus and a few other disorders, so we are no stranger to auto immune disorders. So in addition to the ITP, I worry that over time it could become another disorder, which goes right back to the bargaining phase. Thank you for sharing!

    Janine says:

    Thank you! As a newly diagnosed 50+ year old my life has taken a dramatic turn in the last 3 months. So much to get your head around…….. but today I am feeling a little more at ease.

    Lynn says:

    Recently been diagnosed with ITP with platelets initially at 8. Steroids taking their toll. Would appreciate someone to talk to about this as I’m not sure what’s going on.

      Janine says:

      Hi Lynn, i know exactly what you are going through. I can only say, for me anyway, i have been on high dose steroids for 3 months now and it does get better. The side affects have eased off …or I’ve just got use to them. They kick in again as the dose is reduced but not as bad. My advice to you is read as much information as you can, it helped me understand some of what I’m going through. Good luck xxx

    Pauline says:

    I have just read your blog… and had an ironic chuckle to myself. This is the first thing I’ve read that has described how I feel to a T.
    I was diagnosed with ITP last year (aged 45) and finally got a platelet count of 172 on my own November 2015. January 2016 it reoccurred… platelets back to zero. I’ve been on Elrombopag, with inital infusion therapy and steriods to get my platelets to a reasonable level (steriods were given for first bout and did very little other than kick the life out of me). My Consultant initally thought an antibiotic was the trigger but, has now advised that because I’m taking an age to get a increase in my platelets (now at a whopping 63) it is more than likely triggered by a virus.
    Head is all over the place just now… will it reoccur again?… do I look forward to a yearly reoccurance??… how do I get back to normal life???

    Good to find a blog that mirrors how I’ve been feeling for the last year.

    I’m still waiting for the Consultant to tell me it’s been a mistake… bloods are fine… get back to your life… lol…

    Jennifer Deatherage says:

    My son was diagnosed at the age of six. We have been fightinging it for over a year, but since he was a “normal” child with four older brothers and he is very active I have a hard time making him understand he can’t do those things anymore. He just says I’m fine mom those drs don’t know what they are saying. His normal has been 20000-30000. We have felt with the mouth bleeds and the nose bleeds. He loves to hunt and fish but even before he can go hunting we have to have the ok from the drs. Does anyone else have these issues that can give me ideas to help him cope with this? Because it’s like the more I say “you can’t” the more he rebels.

    Anya says:

    This story describes alot of the same feelings I had. I was diagnosed in spring 2008 at age 30. I had a way to explain away everything i was experiencing. I was always extremely tired but just thought I liked to take naps. My gums began to spontaneously bleed but I thought it was because I had braces at the time and wasn’t flossing as I should. I lost a ton of weight and didnt look good but I was working out so it only made sense that I would lose weight, right? When the large red splotches started to appear i thought it time to get checked out.

    First blood test my platelet count was 8. I was called at work and told to immediately go to hospital for transfusion. It was terrifying. I began aggressive steroid treatments but every time the dosage dropped, so did platelets . I went cold turkey and stopped taking steroids because I was afraid of side effects. I lost my sister to lung disease, which I attribute mostly to the high prednisone doses. My doctor thought the next course of action should be splenectomy. This was October 2008. I had the surgery and stayed in hospital for 2 days. I went home but just did not feel well. I started to throw up everything I tried to put in my mouth. A week after surgery I was back in hospital diagnosed with a blood clot in my stomach. It went from bad to worse after that. I spent 3 weeks in the hospital, alot in ICU.

    Fast forward about 8 months post splenectomy; I had moved from the Midwest to South with a new team of doctors. I began to see the red splotches and bleeding gums again so I knew the deal. Steroid dose pack with same results. My hematologist the at the time suggested Rutuxin. I took a 5 week (1 day weekfor 4 hours) treatment and my platelets increased and remained stable.

    8 yrs post Rituxin treatment, my platelets remain strong, even with a pregnancy which I’m told could cause them to fall. But as one of my docs told me in the past, ITP is for life. I live in fear that my platelets will crash at any moment which is what led me to this blog…just trying to see how many people have been in remission for as long as I have.

    Prayers for you all!

    Beth deSousa says:

    I have a completely different story than those I have read here. I wonder how unique my situation is. I am 53 now and when I was 19 I started noticing bruising on my calves that didn’t seem to go away. I had no pain or outward signs of sickness. We all know at 19 we think we are going to live forever so nothing seemed that serious to me. After having a check up, the doctor told me I should to get my platelets checked. I don’t recall that he was insistent, but it’s been a long time ago. I told my mother, who was a nurse, about my low counts and she immediately took me to a Hematologist who put me in the hospital the next day. This was 1983. At first the Dr. told my parents I might have Leukemia, then the results came back as ITP a few days later. They sent me home on a course of steroids (Prednisone, I presume). 2 weeks later they realized the steroids were not working, so they said they were going to remove my spleen. Back then, you spent a week in hospital and I have a vertical scar from the bottom of my sternum all the way to my belly button to remind me of my stay.

    The unique part of my story starts here. Once they clamped off my spleen, my platelet count started going up. Over the course of my recovery, my body quickly brought my platelet count back to normal and I have never been sick since. I never taken any meds and my CBC Platelet count is normal every time I have it checked.

    Has anyone else been cured in this way with the simple removal of your spleen? Did I get lucky or would more people benefit from spleen removal? Do doctors try to medicate long term now and try to avoid surgery?

    Anusha says:

    My mother just got diagnosed with ITP. Her count dropped significantly. She was addressed with steroids,and it looked like some improvements were shown. 4 days after discharge – her platelets became 3000 and she was admitted immediately. They are trying IVIG. I am just hoping she recovers soon. I believe life would no longer be same for her. Cause of this disorder is still unknown!

    hilary webster says:

    Am newly diagnosed (4 weeks ago) and still trying to understand what is wrong with me and why I am so tired.

    Don says:

    Hey Meg, I just wanted to say thank you for this page. It is a good read, and really hit home with me.
    I was diagnosed seven years ago, and as you can imagine, things haven’t been the same since.

    There is much new emerging information about ITP, though mostly from Europe. I live in the US and I often wonder why Drs in the US dont take ITP more seriously.

    @Hilary Webster – Fatigue is a prt of ITP, though many Drs disagree.
    @Beth deSousa – Spleen removal is falling out of favor as treatment. Seems it isnt nearly as effective as once thought. Dont let a Dr talk you into a treatment you arent comfortable with.

    Arielle says:

    Hi Meg,
    Your article was definitely something i could relate to . I’ve had ITP for 15 years,since i was 4 years old. I really hope this disease doesn’t come in the way of my ambitions in life and im always afraid it will. I’ve tried various medicines but nothing has seemed to work.All i can say is im hoping for some miracle to happen

    silvana dodson says:

    All of you should STOP ANY MEDICAL TREATMENT NOW!!! I was told 16 yrs. ago I have ITP. Blood count 2. I went through all the medications and shots and NOTHING. As soon as my count went up as soon went down. Sideaffects from medication not worth the game. Steroids gave me DIABETE TYPE 2. I stopped treatments in 2012. I am ok I feel better and full of energy since the luck of your energy is taken away NO FROM I T P BUT FROM ALL THE WORTHLESS MEDICATIONS. I am 58 yrs. Old and never think of my I T P. My blood count??? Who cares. The worst you can do to your body is too listen to all the doctors and follow into their trap to make you take all experimental medications. They don’t have a cure for ITP. Their tips will give you more problems in the future with deadly sideaffects. Good luck and enjoy your life to the fullest as I am.

    Marian says:

    SIlvana, I am glad your way of dealing with ITP is working for you but I would be careful telling people what to do.
    My husband has a tough form of Lymphoma, Periphial T-cell. After going through CHOEP chemo for 6 months, he went into remission for 2 years. Unfortunately, he recently relapsedRadiation was planned but he then started itching and bleeding very bad. He was at 3,000 platelets and hospitalized for three days receiving platelets. They planned a splenectomy but a new Lymphoma dr. stepped in. He decided to try Rituxican and radiation. Before that could start he started bleeding again….platelets went from 173,000 to 4,000. Hospitalized again for three days. Got platelets up,to 150,000 so started Rituxican and radiation. This time he went two weeks before they fell to 6,000. Back in for two days. We had so hopedvand prayed the treatment would work.
    We go in tomorrow to see if the radiation got the cancer and to see where his platelets are.
    The poor man is so upset. He is 67 years old. The CHOEP chemo made him so ill. They want to try more chemo but I am terrified that it could kill him because of the unresolved ITP. He’s so wonderful.
    I will always want him to have blood tests. It’s too dangerous not to. SIlvana.

    Kris says:

    Hi all, I feel for you all ..My dad died of this disease at age 34 I was 9yrs old. My dear brother was diagnosed with ITP at 14yrs old he suffered for years in and out of hospital. He died at age 29yrs October 1999. They told mum it was not hereditory! They pulled dads notes from hospital as it was rare and did not know much about it. My nephew has ITP too. So how can they say it is not hereditory. Both had spleans removed Brain hemmoragh at the end of my brothers life was too painful. I wish they knew yrs ago how to treat this😔😔😔😔

    Tracy says:

    I came down with ITP at the age of 32 in 2009. I was at the gym and saw millions of purple spots on my legs. Went home thinking that’s weird. When I got home and saw my myself in the mirror with dark salvation spits all over my tongue I thought I was crazy. I unfortunately drove myself to the emergency room in the middle of the night- something I learned you should never do with my condition. They checked me in right away for chest pain, ( I didn’t know what else to say… I thought I was crazy for saying I had purple spots all over me). They did my work up and I remember the nurse coming in and saying” we need to take your blood again. We must have done something wrong. I said why and she said, you have no platelets “. About an hour later they wheeled me in on a gurney to my first hospital room. No words, no explanation. I remember the night nurse coming in to introduce herself and me saying…” I don’t understand why I’m here. What’s wrong with me?” And she said, ” oh honey, right now if you sneeze you might bleed in your brain and die”. That made me instantly quiet.

    I went through all of the treatments. Platelet infusions everyday for 3 months, 3 hospital stays for about s week each. 3 treatments of IVIG. Prednisone. Nothing worked more than a day. They talked about taking my spleen, but my doctor ( an extremely good doctor. I would say the best in the world) told me that I was very young and the spleen comes in handy later if I ever needed chemotherapy drugs. It acts as a filter and without it I might lose my second chance later. So he said taking it would be a last resort.

    At the same time they tried to find a cause for the ITP. They never found it. I went through many blood tests, a bone marrow test which was extremely scary. It was a lot of waiting. But my doctor said it was best to try all methods first.

    So the day came when the doctor decided to try Whinrho SDF. The doctor said it was a chemotherapy drug that could be harsh when it came to side effects but it had been successful in some patients with ITP. Harsh doesn’t even come close to how I would describe it. The drug was a 15 minute IV. But I remember when it hit my bloodstream a sort of cracking sound. I got huge welts across my stomach. They gave me Benadryl to counteract the allergic reaction. More platelets also to fill me up.

    The next day, my platelet count stayed steady. Over the next week it continued to rise and a month later it was normal. I stopped the prednisone about 3 months later. It’s been 6 years and it’s never relapsed.

    I had ITP a total of 6 months. Winrho saved my life. It might not be for everyone but maybe it can help someone else. I’m linking an article to it just in case.

    Mike says:

    Just because you’re a miserable pessimist doesn’t mean we all have to be. I’ve had itp for a decade now. One kidney Hemmorhage, 3 cerebral, all events requiring extended visits to icu, and yet I don’t dwell.

    Why do I even bother writing this? Tonight, in the moments between reading a few chapters and falling asleep, I decided to look up the answer to a random itp question that came to mind. For some reason, this article was on the first page of Google results. I click it, and begin reading. Within seconds I am assaulted by the misery you put forth in your opening paragraphs. Thanks…

    Amanda says:

    I was diagnosed with ITP in January of 2014. I was pregnant and my counts were not horrible – 32000. But my OB sent me to a Hematologist. That first hematologist was seriously a quack. All he did was regulate my platelet count with prednisone. I continued to see him for 6 months after I delivered my son. He would put me on the highest dose, my platelets would come up, and then he would move me to a smaller dose, and platelets went down. At one point he completely dropped me off the highest dose cold turkey, which I later found out was extremely dangerous. I was so completely drained, and had zero energy. My legs constantly felt like the muscles were detaching from the bones. I couldn’t sleep due to the pain. I couldn’t climb stairs, and we live in a two story house with a basement, so two sets of stairs that I could not walk up and down. I think it hurt more to walk down the stairs than it did up. I was extremely depressed and heartbroken that I did not have the energy to take care of my newborn son. I could not even get out of bed at night to make his bottle, so my husband had to do pretty much everything. I remember trying to stand long enough to prepare a meal for my husband and two other children. When that became impossible, I knew it was time to do something. I got an appointment with the main hematologist at a large hospital in Little Rock, AR. I went in and they drew several tubes of blood, examined me, discussed a few different possible game plans (depending on my blood results) and said they would call me the following week with results. This was on a Friday. I did not even make it out of Little Rock, and my cell phone rang. My platelet count was at 8000, and my iron was dangerously low. He wanted me back up there to do a rituxin IV Monday morning. He put me on steroids until then. I took my first rituxin treatment in Little Rock, and then my remaining 4 at a Hematology/Oncology center closer to home. My platelet count came way up to satisfactory, and my ITP has been in remission since then. It is now 2018, and no issues. I had monthly checkups for about 6 months, then every 3 months, then 6 months, and then a year. Last summer, I was released from checkups unless any symptoms recurred, which they have not. Have you checked into or tried the rituxin treatments? They truly saved me. I know that it is not a definite permanent fix, but so far so good.

    Christopher De Leon says:

    Hi Meg.
    Thank you for initiating this very helpful conversation.
    I was diagnosed last month only. I took steroids for a month. With high dosage, my platelet increased from 25000 to 160000. But with low dosage, it dropped to 43000. My story is ongoing not the same as the others. I shall be seeing my doctor tomorrow to report my platelet count today. If you can give advices, I shall appreciate.

    Gabie says:

    Back in 8th grade I just went for a check up and they did blood work and the next day the doctor calls and says that I have to be rushed to the ER and that they (the hospital) will be expecting me. I was issued a drug threw IV, had an Allergic reaction when I was already almost done with the medication but ended up fine. But my tiny bruises became more vivid and my eyes where blood shot red(I have a picture) but everything faded two weeks later. But now I’m 22 and I believe it’s come back

    Anel says:


    I was diagnosed with ITP at a very young age. The doctors hoped that as I grow older it would become better but instead it got worst.

    My platelets kept on dropping. I went to the emergency room quite often to stop bleeding. I felt like I am in a box and that I can’t do the stuff other children did, because it was “to much of a risk”. I tried every treatment that my doctor advised us on. Long story short. My nose started bleeding one day and we couldn’t stop it, it went on for hours and hours so my dad decided to take me to the emergency room. They took my blood plate count and they were scared that I can get blood on my brain so they scheduled a emergency spleen removal. I was only 14 years old. I am 19 now and forever greatfull that I no longer have ITP.

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