The Biggest Impact ITP has on it’s Patients?

living with ITP, blogs about ITP, ITP lifestyle, platelet disorder, blood disorder

Feature image from LAURACONRAD

So it’s been a quiet little week at our house.  No news, nothing is bothering me.  It has been a strange empty week where I found myself reading articles I had put aside to read months ago.

Many of them where detailed breakdowns of microscopic bodily functions.  a few others where dense incomprehensible nonsense, and then I found this… ‘Impact of CHRONIC IMMUNE Thrombocytopenic Purpura on health related quality of life.’  These are the results from a collection of studies and focus groups from 2008…

While the paper acknowledges that platelet counts are of the utmost importance to patients and treating doctors, as they are often the only indication used to measure the success of the treatments, this paper attempts to discuss the symptoms which are not always considered.  This paper asks the question, ‘What of your quality of life?’

Yes it’s a little old, (what ITP research isn’t?)  The paper is from 2008.  Can you believe that is 7 years ago?  A life time ago in terms of medical research.  Below are stolen chunks of the literature, the results of the survey and study.

Biggest Lifestyle Impacts
Although they did not provide details or rationale for the selection of the items, Cooper, et al.’s choice of questions suggests that fatigue was a primary concern for ITP patients.  Perhaps they are tired of explaining ITP to people?

Patients reported a strong relationship between the symptoms of ITP and functional health limitations particularly with respect to the need to limit daily activities. For instance, patients reported that their activities were limited because of fatigue.

Patients frequently mentioned “anxiety”, “depression”, and “FEAR” to describe their feelings about their symptoms. Many patients reported that ITP and it’s symptoms had an effect on their personal relationships.

Work Life
‘The majority of patients in the focus groups indicated that ITP had interfered with their ability to work, and some individuals mentioned that ITP had hindered their ability to advance in their career. Many patients reported that they took time off or quit working entirely due to the symptoms or treatment of ITP. A female patient stated, “I loved working but the fact that I have to sleep when I’m not working makes me want to work less so that I can do something besides sleep.”

Social and Leisure Activities
‘Patients with ITP report suffering from feelings of social embarrassment due to visible signs of the disease (bruising) and that their involvement in sports or other physical activities is limited. Patients also mentioned the RECOVERY AFTER EXERCISE was extended due to ITP.  Testimony such as “My bruising bothers me especially in the summertime when I can’t [go swimming] because I’m always bruising and people look at you funny” and “I’ve had co-workers and friends ask me if my husband was beating me”

The Ladies.
‘Female participants also reported bruising and bleeding as a result of sexual intercourse.  Information from the focus groups highlighted the exacerbation of MENSTRUAL bleeding (both severity and duration) in women with ITP.

The numerous publications dealing with pregnancy and obstetrics indicate that ITP greatly affects women, particularly with respect to child bearing. Note that this paper does not indicate how.  Fear and anxiety is a large factor in how ITP effects reproduction.

In addition, some women also mentioned anxiety over the potential inability to bear children. However, the literature suggests that the outcome of pregnancy in WOMEN WITH ITP is generally good, if close monitoring and treatment is provided to expectant mothers and infant.  But this does not seem to stop the worry.

Do you agree with the results?
What I am wondering is if you actually agree with these findings.  I don’t feel like many of them relate to me, they seem very dramatic really.

 

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

3 thoughts on “The Biggest Impact ITP has on it’s Patients?

  1. bhatton@internode.on.net'
    Bron says:

    Strangely enough so much of this applied to me. I spent a total of 6 months in hospital one year having ivig treatments and got severely depressed. I had to reduce my full time work load to 3 days and know that although my work mates tried to be supportive i just wasn’t pulling my wait as I was always so so tired. When on high doses of steroids 150mg for nearly 2 years (each time they weaned I crashed)

    I would be awake for up to 72 hours and was quite literally spun out and horrendous to deal with. I put on an enormous amount of weight my joint pain was horrid. My cycle was how I was eventually diagnosed with some lasting up to 21 days and not being able to do much to to such heavy bleeding.I did wear long shirts after my arms were so black and blue and somebody likened me to a junkie in passing comments and I was super paranoid and self concious. I did experience bleeding after intercourse which made my husband also very paranoid and caused concern for us both. I had my spleen removed 2 years after diagnosis with no success (Had platelet transfusions,prednisone, dapsone, ivig x 15 and rtuxin x 4).

    Living 2.5 hours from my heamo travelling back and forth for clinics and treatments was exhausting physically emotionally and financially. I had to research and fight tooth and nail for some treatments and wait for months on end for approval causing great distress .I fell pregnant after waiting 12 months after rituxin treatment only to have a miscarriage. Another 6months later we fell pregnant with the help of chinese herbs. I got to 3 months and ended p back on prednisone then ivig and an emergency ceaser. My son was born fine but developed itp at aged 4and I was devastated, has been hospitalised 3 times with bleeds and treated with ivig. For now he is in remission and so am I thanks to my 4th 4 rounds of rituxin. ITP changed my life dramatically and has been a hard road to travel at times. These days I am..well not blase about it but pretty laid back and don’t fuss too much..I just don’t have the energy to be honest L. Because its one of those diseases that comes about for different reasons and each of us are different there is as you said never the same experience for anybody.

    To be honest I read some forums and think for heavens sake you are carrying on a lot with a count of 30,000 you are demanding treatment, harden up princess, then I remember the early days nearly 18 years ago and the fuss that was made of me then. It is scary for newbies especially anybody has never had medical issues. I don’t think we are so rare anymore either.

    Some had a few platelets some have a lot some have big ones some have small and poorly functioning ones. The beauty of the internet and blogs such as yours and support groups is that we are so much more informed these days about ITP, but this too can be a blessing and a curse 😉 Dramatic for some not for others.

  2. angi@mathochist.com'
    Angi Long says:

    Remember that for 20% of people with ITP, the ITP is secondary to something else. I don’t know the statistic, but I’m sure there’s also a large subset for whom ITP is the primary disease but there are other conditions that are comorbid, and others who happen to have other conditions completely unrelated to their ITP. In any of those cases, it’s impossible to really separate out what’s caused by the ITP and what’s caused by the primary disease and other related or unrelated comorbid conditions.

    I suppose that to get a real idea of how much ITP affects people just by itself, you’d have to limit your survey to people who had only ITP and no other condition that could be contributing to those symptoms. But on the other hand, when you do have other conditions, then the ITP can affect you more than it would if it was alone, so that wouldn’t give a complete picture of how much ITP has the capacity to affect people in general.

    I would be interested to see the results of the survey (or better yet, a more recent one) split according to which other conditions the subjects also have.

  3. laughery.christopher@gmail.com'
    Christopher says:

    Sports were my favorite as a child. I played about every sport except for soccer. I felt as if once I started playing, there was no stopping me. However, once I did have to ‘call it quits’, my body always seemed to take days to fully recover. When the rest of the kids returned to
    practice or games, my body never felt like it was rested enough. The fatigue fed right into anxiety and depression as I felt as if I wasnt normal.

    As an adult, I work in a warehouse where I am constantly exhausting my body through physical labor. When I get home from work, it is absolutely imperative I rest. There is really no life outside of work because of this. I recently took a week off to rest and recover (first holiday in a year) but now Im short of money, more depressed and more depressed.

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