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.
‘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”
‘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.