ITP Patient Resources

What is immune thrombocytopenia?

Immune thrombocytopenia (ITP) is a rare autoimmune disease that stops your blood from clotting properly which can result in excessive bleeding and bruising.¹

Live life with ITP

Meet our new Live Life with ITP ambassador, Jonny Mellor, who was Britain's fastest male at the 2020 London Marathon. Jonny ran the marathon in an Olympic qualifying time despite living with ITP. Hear his inspirational story below and his advice for others living with the condition.

Niamh is a dietitian working for the NHS, living with ITP. She talks below about her journey and gives advice on how to live life with ITP, because platelets aren't the only thing that count.

Our Live Life with ITP resources focus on giving you the support needed to understand more about your condition and to assist you on your ITP journey.

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Download the Free ITP Pocket Log App

Videos to help you understand and manage ITP

Our videos below have been developed in collaboration with the ITP Support Association to help you understand more about ITP and prepare for medical appointments effectively. They will help you gain greater insight into both the physical and psychological aspects of living with ITP, so you can better understand your ITP diagnosis and how to Live Life with ITP.

What is it like to live with ITP?

Because ITP varies in severity, everyone’s experience is different. When diagnosed by your doctor, you will be determined to be in one of three phases: newly diagnosed, persistent or chronic.²

Depending on what phase you are in, you may find that there are times that ITP is harder to live with, and there may be other times when symptoms will seem more under control. Watch the video below to find out more about what it is like to live with 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, which you can share with your doctor or nurse.

How can ITP be treated?

People have different needs when deciding on the treatment that is best for them. Your healthcare team will work with you to decide what treatment is right for you. Watch the video below to discover more about the treatment options for ITP.

How can I manage fatigue?

Are you feeling overwhelmingly tired or fatigued? This is a very common and frustrating symptom of ITP. Talking with your doctor about how you feel can help them assess your treatment options to see if symptoms can be improved. Watch the video below for helpful hints on managing feelings of fatigue that might be affecting your everyday routine.

UK data from the ITP World Impact Survey (I-WISh), conducted by Novartis in collaboration with patient groups, revealed fatigue as a key symptom burden. At diagnosis, two thirds of ITP patients reported experiencing fatigue and 84% of patients believed ITP to impact their energy levels at least sometimes, indicating the disruptive effect ITP can have on day-to-day life.^3,4

How can I prepare for my medical appointments?

Medical appointments can sometimes be a bit daunting. It’s easy to forget what you are meant to ask and can be difficult to remember what was discussed. The video below provides suggestions on how best to prepare for your next appointment and make the most of your ITP discussions with your doctor or nurse.

How will ITP affect me emotionally?

It is not uncommon for people to experience negative emotions about their ITP, either at diagnosis or even when dealing with the condition on a bad day. Struggling with feelings of isolation, anxiety and depression are not unusual. Click on the video below to find information on how you might feel about your ITP, as well as who you can speak to and where to go for help.

The I-WISh data revealed the emotional toll that ITP takes on patients’ lives, with almost a third of patients’ saying that they worry about their condition getting worse.⁵

How can I exercise with ITP?

Exercise can be helpful for both your physical and emotional well-being. Being diagnosed with ITP does not mean that you have to miss out on physical activity. With the right guidance you can still take part. Watch the video below to help you plan an exercise programme that best suits you and your needs.

How does ITP affect children?

If you have a child or are looking after a child with ITP, you will want to understand how their condition can affect them. Watch the video to see how ITP affects children differently, together with practical information and guidance on who to talk to about treatment, side effects and managing a child’s everyday routine at home and school.

What treatments are available for children with ITP?

Most children with ITP will see improvements in their condition within 6 months, with or without treatment. Treatment may depend on the severity of symptoms. The short video below provides an overview of the different treatments available to treat children with ITP and how they work. Talk to your child’s doctor for further information on these treatments.

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

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.

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. 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: June 2020

2. Provan D et al. Updated international consensus report on the investigation and management of primary immune thrombocytopenia. Blood Adv 2019; 3 (22): 3780–3817. doi: https://doi.org/10.1182/bloodadvances.2019000812

3. Cooper, N. et al. Symptom burden in Immune Thrombocytopenia (ITP): Findings reported by
   UK patients and physicians from the ITP World Impact Survey (I-WISh). Abstract published in the British Journal of Haematology. Abstract BSH2020-PO-072

4. Cooper, N. et al. The Impact of Immune Thrombocytopenia (ITP) on Activities of Daily Living: Findings reported by UK patients and physicians from the ITP World Impact Survey (I-WISh). Abstract published in the British Journal of Haematology. Abstract BSH2020-PO-035

5. 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.

ONC19-C102a(2) | November 2020