ITP Patient Resources

What is it like to live with Immune Thrombocytopenia (ITP)?

ITP is an autoimmune disorder that stops your blood from clotting properly which can result in excessive bleeding and bruising.1,2

Although ITP cannot yet be cured, it can be managed to ensure that daily living is made much easier.1

Because ITP varies in severity, everyone’s experience is different. When diagnosed by your doctor, you will be determined to be in one of four phases: Newly diagnosed, persistent, chronic or severe.3

ITP Severity

  

Description

Newly diagnosed

  

Within 3 months from diagnosis3

Persistent

  

Between 3 to 12 months from diagnosis. Includes patients not reaching spontaneous remission or not maintaining complete response to therapy3

Chronic

  

Lasting for more than 12 months3

Severe

  

Presence of bleeding symptoms at presentation sufficient to mandate treatment, or occurrence of new bleeding symptoms requiring additional therapeutic intervention with a different platelet-enhancing agent or an increased dose3

Depending on your diagnosis, you may go through periods when ITP is harder to live with, and there may be other times when symptoms will seem more under control.

Our Living Life with ITP campaign focuses on giving you the support needed to understand more about your condition and provides useful resources to assist you on your ITP journey.

The information provided on this page will help you gain greater insight into both the physical and psychological aspects of ITP. This way, you will be able to understand more about your personal diagnosis and prepare for medical appointments effectively.

Jump to:

Emotional Burden
ITP Management Video Series
Download the Free ITP Pocket Log App

Emotional Burden

ITP Burden

While some of the common symptoms of ITP, such as bruising, are visible to others, there are others, like fatigue, which are not.1,4

Our I-WISh survey, conducted in 2018 revealed that fatigue was the most frequently experienced symptom by almost half of UK patients, demonstrating the effect of ITP on day-to-day quality of life.4

Nearly three-quarters of UK patients surveyed said that ITP affects their energy levels. They also emphasised the emotional toll the disease takes on their lives, with almost a third worrying about their condition getting worse.4

Patient videos to help you manage your ITP

We have created a range of resources to support and help you work with your care team to manage the emotional toll of the disease, as well as to track your ITP symptoms. Below are some useful videos from our animated video series developed in collaboration with the ITP Support Association. Make sure you visit this page regularly for further videos on various aspects of living life with ITP.

What is ITP?


 

What is ITP?

Learn more about the common symptoms of ITP and what causes this autoimmune condition.

Living with ITP


 

What is it like to live with ITP?

The good news is that most people can live full and productive lives with the right medical treatment. ITP varies in severity so everyone’s experience of living with it is different. Watch this video to find out more.

Keeping Track of my ITP


 

How can I keep track of my ITP?

This video shows how you can keep on top of your ITP symptoms to feel more in control and monitor your progress with your doctor.

Treating my ITP


 

How can ITP be treated?

Discover more about how to treat your ITP. People have different needs when deciding on the treatment best for them. Your healthcare team will work with you to decide what treatment is right for you.

Download the free Novartis ITP Pocket Log App to keep track of your ITP

ITP Pocket Log App

Living with ITP can be difficult and unpredictable. We have developed the ITP Pocket Log app in collaboration with the ITP Support Association, which you can download for free. The app has been created to support people affected by the condition by enabling them to record and track symptoms, and monitor the impact on their life over time.

Through the app you can record your symptoms, test results and medications, and see your symptoms displayed as a graph. This way, you and your care team can see progress over time and look for connections with other life events or treatments.

Download on App Store   ITP app Google Play

You can also use the Pocket Log App to:

  • Take photos of your symptoms to share with your care team

  • Access useful tools like a calendar and a ‘More on ITP’ section

  • Store your medical team’s contact details

To download the app, just search for “ITP Pocket Log” in the Google Play or Apple Stores.

Find out more about ITP on our immune thrombocytopenia (ITP) overview page

Want to learn more about ITP? You can follow our Facebook and Twitter channels for regular information, updates and news.

References:

  1. Guy’s and St Thomas’ NHS Foundation Trust. (2016). Immune Thrombocytopenia [Fact sheet]. Retrieved from: https://www.guysandstthomas.nhs.uk/resources/patient-information/haematology/Immune-thrombocytopenia-web-friendly.pdf Last Accessed: 19th September 2019

  2. Oxford University Hospitals NHS Trust. ITP Information for Patients (2015) [Fact sheet]. Retrieved from: https://www.ouh.nhs.uk/patient-guide/leaflets/files/12388Pitp.pdf Last Accessed: 02 October 2019

     

  3. Rodeghiero F. et al. Standardization of terminology, definitions and outcome criteria in immune thrombocytopenic purpura of adults and children: report from an international working group. Blood Journal. (2009). Volume 113, number 11.

  4. Cooper N, et al. Burden of disease in Immune Thrombocytopenia (ITP): The initial results for UK patients from the ITP World Impact Survey (I-WISh). The British Society of Haematology. 2018. Abstract BSH18-289.

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