Hi, I am doing a project on living and dealing with ITP to gain an extra AS level qualification and support my university application. I would really appreciate if sufferers and/or family members of sufferers could answer the following questions in order to help me talk about how patients are supported in my project.
1. What kind of support do you think your family member needs the most (e.g. emotional, physical)? Why?
2. How do you offer support to the sufferer?
3. Are there any lifestyle changes which need to be made to accommodate ITP? Please explain.
As mentioned above, I would really appreciate feedback at some point this week in order to complete my project.
Thanks
Written by
JK13
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ITP affects different people in different ways so support will depend on the severity of the condition and the individuals symptoms.
Support is undoubtedly necassary and appreciated by those with ITP. This can be in a variety of ways from just being there and understanding the condition through to in the worst cases, to actually having to be ready to take you into hospital for treatment if major bleeding occurs. Undoubtedly, family should be made aware of the condition and the implications. They need to be able to react if bleeding is a problem. However, emotional support is by far the most important as undoubtedly, people with the condition can and do often feel victimised and ask why me?; they suffer from fatigue which can be debilitating in itself quite apart from the possibility of experiencing bleeding.
Life style changes will again depend upon the individual and the activities they have enjoyed in the past. However, as a general rule, they should avoid situations that could cause a bleed either by trauma or particularly by blows to the head. However, you cannot wrap yourself up in cotton wool and become a hermite so the answer is enjoy life but be mindful of the dangers and use your common sense. If in doubt, don't do it.
This is a short answer which I hope will be a start for you. However, I suggest you look at the web site and contact the support group who will be able to provide you with some litrature, probably electronically, and there are people in the group who you could call and speak to.
1) In my experience of being an ITP sufferer since 2006, I would say that it is a combination of emotional and physical support that I needed. In terms of physical support I am thinking of things like getting my wife to ferry me to and from the hospital for regular check ups, relying on her to collect my prescriptions for me when I had to get off to work, needing my wife to do much more around the house when my platelets were very low (under 20) so that I would avoid bruising or potential knocks, cuts etc. So for me I had to rely on my wife to do quite a lot of extra work but also on the emotional side I relied on her so much especially when I was first diagnosed. Obviously it is quite traumatic getting diagnosed with any major illness but I think that it is the uncertainty and randomness of ITP which impacted on me the most. Different people of course react in different ways, indeed the very nature of ITP is that the only definite thing you can say about it is that NOTHING IS DEFINITE.
2) Support for me was really a matter of making sure that my wife and family were fully aware of what my ITP actually meant. It was difficult at first because it was really a matter of getting my platelet levels up to a safe number but then it was a case of making sure our work schedules and daily planning was always
set up to allow for things like my hospital visits, treatments etc. So I would say that on the physical support side it was really making sure that we had good time planning but also that we stayed as flexible as possible because ITP has a habit of knocking platelet levels down just when you think they are safe. They fall at the worst possible times and for example we had to miss 2 holidays at the very last moment because my platelets fell to unacceptably low levels and my specialist advised against flying. The emotional stress of losing things like holidays and the financial loss are a major blow but against that the bottom line is that my health was the most important thing. I have to say that we have now got used to being very flexible with our planning, we don`t look or plan too far in advance and I guess that generally we do not take anything for granted.
3)Lifestyle changes of course are numerous and each ITP sufferer will be different depending on which treatment they are on and how they react to the treatment(s). The side effects of the treatments are often much worse than the ITP and the treatments in themselves do hamper many of the activities that we all take for granted before ITP comes along. In general ITP sufferers are advised to avoid any contact sports or hazardous pursuits. Also ITP sufferers have to be very careful what medication they take, for example aspirin, ibuprofen and any products containing them should be avoided. Also to avoid are any products containing quinine like tonic water and bitter lemon drinks. Other items to avoid are echinacea and any herbal remedies or any so called miracle cures. ITP sufferers should not take anything at all without specific advice from their specialist/hospital. Other things which ITP sufferers need to bear in mind are ordinary things like a visit to the dentist as most dentists (and GPs in my experience) will not know anything much about ITP or the dangers that it poses for dental treatment. Some anaesthetics that dentists use clash with some treatments that ITP sufferers may be prescribed (eg steroids) and it is very important to tell your dentist that your are an ITP sufferer and advise him what medication you are taking . Also make sure that you regularly update your dentist on your situation.
I hope that all this helps you Jess and I have added below a couple of links which may further explain some of the ground I have covered....
Thankyou very much, as I am towards the end of my project, I have already come across these websites and used them a lot, I have also come across some videos from the PDSA on youtube which have been very useful.
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