Your cTTP Care

Your cTTP care

After a cTTP diagnosis, thinking about appointments, time off work and everything else that comes with managing your treatment can get overwhelming. In this situation, it can be useful to use tools, like the “When, Where, What” system, to help you focus on your own situation. You can use it to plan other areas of your daily life too, such as arranging childcare or making time to follow a hobby.

A yellow lightbulb with a green background.

Quick Tip

You can add a “medical ID” to your phone with information about your cTTP diagnosis and your treatment, which can be accessed by a healthcare professional in an emergency.

The “When, Where, What” system

The tool below can help you to think about your own situation. You can use it to plan other areas of your daily life too, such as arranging childcare or making time to follow a hobby.

When?

A left hand holding a black pen as if to write. The background is pale green.

It may help to set up reminders for your appointments, such as a list on the fridge or in your phone calendar.

Two speech bubbles indicating conversation. One is orange and one is green. The background is pale green.

You can talk to your employer or your child's teacher about organizing time off work or school. You could ask them about flexible working, or about how your child can be supported to continue learning.

A flip calendar showing the days of the month. Weekends are highlighted red and weekdays are grey. A Friday is circled in red. The background is pale green.

Your doctor or nurse can support you with planning your appointments. If an appointment time does not suit you, they may be able to change it to a different time, such as when it will be quieter to travel to the hospital by public transport.

A man and woman sat on the floor cross-legged with a young girl. She sits between them and the woman has her arm around her. The background is pale green.

You may want to speak to your family and friends about how they can support you on the day of your treatment. For example, looking after your child or coming with you for support during the appointment.

Where?

A hospital building with a sign with a white cross on a red background. The background is pale green.

It can help to think ahead about how you will get to your appointment. For example, a family member or friend may be able to drive you, or if you use public transport, you can plan your route in advance.

What?

A man wearing a white doctor's coat and holding a blue clipboard sits across the table from a woman who is wearing a blue top and black trousers. She has her handbag in her lap.

Your doctor or nurse can help you prepare for your treatment and support you in managing daily life with cTTP.

An open notebook with an orange cover on a pale green background. A hand is holding a pen and writing on the left page. The right page is blank.

You can make a list of questions to ask your doctor. For example, questions about your treatment plan, or managing your treatment alongside your daily life. Remember that any question you have is important.

A woman with brown hair and wearing a gray jumper is reading a book with an orange cover, holding it with both hands. The background is pale green.

There may be items you need to take with you to your appointment. For example, a list of the medicines and any supplements you are taking or something to help pass the time, such as a book or music.

If you have questions, or need support to manage the impact of cTTP, you can speak to your doctor or nurse. They may have a phone number that you can use to contact them between appointments.

There are different disease management options to manage cTTP.¹ For example, there is treatment available to manage any sudden worsening of your condition (or acute TTP events) if they occur.² There is also regular, preventative treatment that you may often have at hospital.^1,2 You might find that thinking ahead about your treatment helps you feel more in control. It can also help you to be prepared should any events occur when you are away from home.

Your cTTP care team

cTTP care is delivered by a dedicated multidisciplinary team of people.³ The picture below shows who might be part of your care team but as each cTTP case is unique, there may be more people in your care team than shown below.³ Equally, there may be fewer too.³

Your cTTP care team may include:

The information provided on this website is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any concerns or questions you may have regarding your medical condition or treatment.

References

National Heart, Lung, and Blood Institute. Available at: www.nhlbi.nih.gov/health/thrombotic-thrombocytopenic-purpura. Accessed August 2024.
Sakai K, Matsumoto M. J Clin Med. 2023;12(10):3365.
Understanding TTP. Available at: https://pts.understandingttp.com/en/hospitalized-with-ttp/meet_your_ttp_care_team. Accessed August 2024.