ITP Support Association
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ITP: How Does It Feel?

Immune Thrombocytopenic Purpura (ITP)

-How does it feel to be told that you will likely live for the rest of your 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?

- How does it feel to be told that you need to change, stop, or modify everything in your current life because your greatest risk is having a brain hemorrhage?

- If that's not enough, also to be told that stress along with exposure to germs is going to be number factor in maintaining stable health.

– 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?

-As different treatments become available, we can weigh the risk factors & side effects. All of this just to discuss the possible changes in order to move forward with a new maintenance health plan.

*This is a compilation of ideas gathered from various writers over the years. I put them together to organize how I feel about MY Primary Chronic Genetic ITP.

Thank you for reading my post and as always forgive my typos, misspellings, & imperfections.

Wishing you and those you love much Love, Light, and Laughter along your Journey. Namaste

37 Replies
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It sucks : (

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Thank you for your reply to my post. yes sometime it does. I have learned that through the years that it is a roller coaster.

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It can be a rollercoaster just like yourself and others on this forum one day we will all get off : ))

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PKScott, ITP sucks I find the hardest thing is trying to explain how I am feeling when people assume you are OK with some illnesses you can see ITP is our invisible illness.

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Thank you for your reply. I agree. ITP is an invisible illness most of the time. I write most of the time because there are the times when the bruises are apparent but through the years one can become very good at clever clothing to hid those. ITP is a challenging disease to live with however, I have learned that it is manageable. I would prefer a cure.

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To be Brutaly honest it's s... since I was told and have been on treatment I've not felt well and that was about 3 yrs ago. Onwards & upwards.

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Thank you for your reply and your honesty. I have learned that sometimes the treats can be very difficult to manage. I have also learned that there are many option available for ITP. I do like that I am able to be my own health advocate and my doctor is my guide. What I mean by this, is that I know Prednisone works to improve my PLT counts but I can hardly tolerate the medication so I opt not to take it. My doctor would prefer me to take it because it is easier for them but in the long run, I am the one who has to live in my body so we have worked together to find other options like IVIG and NPLATE which I tolerate better and I get the same result.

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I was diagnosed10yrs ago & knew nothing. Very little information available.

I was over cautious for some time but now I take life as it comes but I'm still cautious. I accepted the condition and found it funny that people on holiday thought I was a battered wife (my husband didn't find it funny).

I get on with my life the best I can but I find the fatigue hard to deal with, I wish Dr's and Haemotologists would recognise fatigue as part of the condition.

It's a rare, hidden condition. More publicity is needed to raise awareness of this condition.

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Thank you for your reply. I agree with your post. If you are not familiar with the PDSA organization I urge you to check them out. Who I was diagnosed I believe I was the only person in the world for about 3 years. I could find nothing on this disease. It was coupled with cancers, pregnancy, and treated and a secondary function of something larger therefore no real attention was paid to treatment much less a cure. The PDSA was formed about 17 years ago and its primary focus is ITP.

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I am soon to have my spleen taken out due to having been on all the drugs and nothing seems to bring my platelets up, after my scans on my spleen it is showing that my spleen is destroying my platelets so the decision has been made to take it out. This is the next chapter of my ITP story

Tom

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How long have you had low platelets, what did it drip to for them to decide to remove your spleen? Did they give you s bone marrow biopsy?

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They have tested my bone marrow and it come back fine. I have tried every drug on the market but none haven't held my platelets up they always drop to 0 so there isn't no more options, and as the scans show that my spleen is destroying them is would seem that by removing it may have a good result

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I had Bone Marrow biopsy 4 weeks ago but didn't get enough bone so still haven't got a true reading, my Scan did show that my spleen as got bigger, it's now 13,5 cm because my platelets is at 74 I'm still on wait and watch, I also have lymphoma which could be another reason for mine dropping,

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I'm sorry to hear they didn't get enough bone marrow to test it, as I know how much that hurts Ester

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Best of luck Tom.. I really hope you get well after this operation. I say it wasn't easy making a big decision like this.

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Thank you, I really really hope so too. I have got a date for the operation now, it’s all abit real now. The thing is from my scans it does show that my spleen is destroying my platelets so by removing it could prove to be successful. At present we have tried every drug on the market and none of them have worked. The only thing that works is ivig but they don’t know the long term effect of this drug and also would mean I would have to keep going into hospital every 2 weeks which isn’t ideal so we are hoping for a more longer solution.

Thanks Tom

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Thank you for reply to my post. I am pleased to read that you had the scan prior to the operation. In the States that is rarely done. I had my spleen removed over 14 years ago with the scan and that was not the cause of my ITP. I have read very positive accounts of this being effective. Wishing you much success in your future journey!

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I'm sorry to hear that it doesn't get scanned in the states, I'm lucky enough to get it scanned here in the uk.

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Did you said Genetic?? Now am more scared, I dont want my 4.5 yr old daughter too face all the trauma I faced. I could see small bruises on her legs but scared to take her for test.!!

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Yes, we have reason to believe that my ITP is genetic. I had my daughter tested at birth and then at a year. She has a stable PLT count today. However, I am not afraid if she does develop ITP. This is why. ITP has come leap and bounds in the last 10 years and it is not longer a disease in the shadows. With organization like the PDSA and groups such as this awareness for ITP has become more mainstream. This mean new drugs and a focus on a cure is now happening. This all very positive news. Don't be scared to take her for a test. The more information you have at hand, the better prepared you will be as a parent to handle what ever comes your way. No matter what it is, everything will be okay.

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Thanks a lot for your kind words. I am in dilemma whether to take her for test or not. If it comes positive, then in her every action, i might become too protective becoz of the condition. Anyway I dont want her to get treated even she has ITP. May be if I see bruises often, I better get her tested.!!

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As parents, we will always be protective. I believe thats a good thing. Instead of gymnastics, try swimming with her... you know :) Like I said before, It'll work out.

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I was shocked to read this post. It is total scaremongering!! I was diagnosed 9 years ago but received no treatment until 2013 when my count nosedived, but at no time before or since have I felt anything like the writer of this post. OK there is no cure -yet - but for goodness sake don't give up and assume the worst. There are so many people, frightened people, who will read this post and start panicking. If you read my posts I try to give people hope, and a sense of well being. I have never given up and accept that I have a condition, I never call it an illness, which is being managed successfully (I know I am lucky in that respect), I will not let it beat me and I just get on with my life. I suspect that PKScott has only just recently been diagnosed, and if this is so I know you must be feeling wretched, but please do not give up, pessimism will only exacerbate the problems.

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Thank you for your reply. First let me write that my post was never written to scare you and I sincerely and honestly send my deepest regrets to you for having that reaction. My post was created over many years and it was posted here and in order to create a dialog between fellow-ITPer's who have such unique and personal ITP journey's.

I am so glad that you never felt like any thing in my original post. That is wonderful to read. I agree that is important to give people hope and a sense of well being. I also agree that it is import to be honest and yet kind. Have the sense of a well managed autoimmune disease such as ITP (or a condition as you like to call it) gives on a peace of mind that irreplaceable. Count your blessings, continue to focus on the positive, and never give.

Just a little information about me so we are no assuming... I was diagnosed almost 15 years ago. I am currently asymptomatic with a walking around count in the 30K range. Being asymptomatic I opt for no treatments. Please feel free to ask me any thing you would like about my ITP Journey. Please remember tone is not inherent in writing so when in doubt assume the best.

Wishing you love, light, and laughter, Namaste.

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Thank you for responding. Your original post did not scare me, but I thought that it might have scared others of a less optimistic frame of mind. I hope my reply did not offend you - as you say tone cannot be conveyed in writing. You are very fortunate in that you are asymptomatic - I sincerely hope you stay that way. Happy and kind thoughts.

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;) no offense, none at all. I appreciate all responses. I have learned through the years that all responses will be different, just like our ITP Journeys. I wish you the same. Many happy and Kind thoughts.

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Well that's a big post!! I guess I have been lucky, I have not stopped anything I do. The tiredness comes and goes but genuinely I had never given it a second thought. I work full time in a job which takes a lot of hours. I was diagnosed in 1989, at that point the really did not know much about anything and for the first 10 years or so I took it very seriously then I realized everything I took everything they did was so short lived there was no point. I can't even tell you the new treatment options despite waking up most mornings covered in bruises and nose bleeds galore! Just relax, you will be fine, if you feel tired get up and do something. Start exercise, I run most days and yes I get bruises on my legs and feet but what can I do? I get home pop some ice on to limit them then repeat the next day. If you just focus on doing a little more each day soon you won't even remember you have it! So much so I have even signed up to a boxing match (maybe will get a blood test before that though)

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Love it. All of the above positive posts have just made my day. Thank you

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Thank you for your reply. Your reply made me smile. 1989 diagnosis, I can not even imagine your treatment options. Keep moving forward!! Love it!

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After dealing with it for a time it became my new normal. No need to freak out. Unless I have bleeding symptoms I go for checks with my hems and get on with life. I wish ITP was the worst of my ailments to deal with now. I seem to collect rare diagnoses. It's all relative. A family member was Diagnosed With lung cancer this week. Another passed away from having his tonsils removed at age 37. So my issue s don't seem as looming over my head as what others are dealing with. Do your best to take care of yourself and live your life and try to focus on the positive things going on

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Thank you for your reply. I have to agree with you. ITP is my new normal. It took me some time to get there but once you get there you can find that balance. I am sorry to read about the lung cancer and tonsils at 37.

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Goodness. I was just saying to my boss yesterday how positive I find this online support group. That post above is truly the opposite. If you need support because you are having a hard week, please just admit that. If you really must promote how bad ITP is, maybe you could tell your friends who DON'T have it, write to your elected representative and your local paper.

Mostly I am struggling right now to stay positive and came on here for some balanced and cheering support.

For five months since diagnosis I have been up and down.

My recent nosedive has led to today's single figure count and mouth blood blisters.

I am feeling blue and exhausted. But I know this low won't last. It didn't last time. I just need to be gentle with myself.

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Thank you for your response. I find your last sentence to be best and true for most everyone.

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How does it feel to know that every time you walk into your oncology and haematology department of your local hospital, you received an all clear for leukaemia just five months ago and most of the people waiting to see a doctor all around you are battling the cancer you escaped?

How does it feel to know that you have to slow down, but then realise that you've been meaning to take more time with your children, friends, family anyway?

How does it feel to know that the best cure for fatigue is sleep? And that this medicine is free!

How does it feel to know that you could try some alternative therapies and alter your diet - even if they just give you a different outlook on life, a physical and mental boost, and a trimmer figure? Oh, and you've been meaning to do that for a while too.

How does it feel to know that for most people with ITP, they live normal lives, carrying on with work, family, new love, travel, children, pregnancy and childbirth, sports, enjoying the outdoors, going out for drinks with friends?

How does it feel to know that you are doing the very best you can under sometimes difficult circumstances?

How does it feel to know that 99% of people on this forum post supportive, helpful messages; but also are brave enough to ask for help when things are going tough?

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Thank you for your reply. Those are some great questions. I know for sure that people ask themselves those questions. I am glad that you took this time to think of those and to share.

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Thank you all for taking the time to read the original post and taking the time respond. I wish you all much love, light, and laughter on your unique and personal ITP journey. Namaste.

PK Scott...

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Its scary like a rollercoaster but 25 years on its just part of who I am. I have raised 2 fabulous children returned to work and studied for a degree and professional exams. There is so much more information now. Having my spleen removed has helped with stable counts but risk of infection and fatigue are reminders of ITP.

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