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Leaflets

Here you will find a selection of information leaflets for download

Travel Translation Documents

It can feel daunting to travel for pleasure or work with a diagnosis of TTP. Patients often worry about travelling abroad and what would happen if they had a relapse or felt unwell in a foreign country.

Below you will find a letter written in English which explains that the holder has TTP and which team to contact in an emergency. The letter can be used to give to a hospital or doctor in this country and often abroad, however, it has also been translated into a number of languages for you to carry if you travel across the world.

Print it out together with the English letter and keep it with you. Don’t forget to complete your name, consultant and hospital details in the spaces as shown in the English version.

If you are travelling to a country not listed below, contact us and we will do our best to organise a translation for you. Please allow a minimum of 4 weeks for this. Contact info@ttpnetwork.org.uk

Please Note:
All information contained on this website is subject to our Disclaimer policy. For our full Disclaimer please click here.

February 29, 2024

TTP Nurses - British Journal of Nursing

Clinical Nurse Specialists Jessica and Jo wrote this article which was published in 2024

January 4, 2024

ADAMTS13 and Non-ADAMTS13 Biomarkers in Immune-Mediated Thrombotic Thrombocytopenic Purpura

January 3, 2024

Cognitive decline in thrombotic thrombocytopenic purpura survivors: The role of white matter health as assessed by MRI

British Journal of Haematology

January 3, 2024

Immune Thrombotic Thrombocytopenic Purpura in Elderly Patients: The Roles of PLASMIC and French Scores

January 3, 2024

Cardiovascular Disease and Stroke in Immune TTP-Challenges and Opportunities

January 2, 2024

Targeted ADAMTS13 Replacement Therapy for Thrombotic Thrombocytopenic Purpura

jthjournal

January 2, 2024

A Descriptive Analysis of Fatal Outcomes in Immune Thrombotic Thrombocytopenic Purpura in the USTMA TTP Registry

National Library of Medicine

January 2, 2024

Open ADAMTS-13 conformation index predicts earlier relapse in immune-mediated thrombotic thrombocytopenic purpura

January 1, 2024

Bortezomib in relapsed/refractory immune thrombotic thrombocytopenic purpura: A single-centre retrospective cohort and systematic literature review

January 1, 2024

Two pregnant women with immune-mediated thrombotic thrombocytopenic purpura: A case report

December 31, 2023

Long‐term follow‐up of patients treated with caplacizumab and safety and efficacy of repeat caplacizumab use: Post‐HERCULES study

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November 5, 2020

Management of thrombotic microangiopathy in pregnancy and postpartum

American Society of Hematology

October 22, 2020

Cerebral MRI findings predict the risk of cognitive impairment in thrombotic thrombocytopenic purpura

BJHeam

National Treatment Protocol

Click below to find out how you should be cared for

What is Thrombotic Thrombocytopenic Purpura (TTP), and how common is it?

Thrombotic Thrombocytopenic Purpura (TTP) is a rare blood disorder that affects between 1.2 and 11 new cases every year per million of the population. Although it can affect people of all ages, the average age of diagnosis is 40 years. The condition is more common in women than men.

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Are there different types of TTP?

The two main types of TTP are acquired TTP and congenital TTP.

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What are the common symptoms of Acquired TTP?

The symptoms of Acquired TTP can vary greatly. However, symptoms like headaches, confusion, anxiety, stomach upset, fever, disturbed vision, and stroke-like symptoms are frequently reported. Some patients may also experience flu-like tiredness.

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Can I relapse with TTP?

After the diagnoses of TTP some patients will relapse. Research suggests between 30-50% of patients will relapse. It is important to patients to be checked up routinely for life.

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What is Congenital TTP?

Congenital TTP is a rare genetic disorder that affects blood clotting and leads to the formation of small blood clots in blood vessels throughout the body. It is not clear what causes congenital TTP, but some patients exhibit symptoms at birth while others do not until adulthood. Pregnancy and infection are both potential triggers for this disorder.

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Are there things I should avoid?

Most things are fine to eat and drink with a TTP diagnosis but if you are concerned, speak with your Clinical Nurse Specialist. Most activities are also fine but again, speak with your TTP team.

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Can I travel with TTP

Once remission is achieved, travel is fine. Do check with your specialist team before you set off and don't forget to look at our travel translation documents on this website and our link to the travel website Insurance page: https://yourtravelandhealth.com/travel-insurance/

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Can I drink alcohol with TTP?

Everything is fine in moderation.
If you are concerned speak with your TTP Team

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Can I receive dental care and medical proceedures?

once in remission dental care and medical procedures are usually fine. Speak to your TTP team first as check on bloods maybe useful first.

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The ConNeCT Study: Neurological Complications of TTP

Open until 10th February 2024. The ConNeCT study is a UK based study, approved by the NIHR, aiming to improve our understanding of complications involving the brain and nervous system in TTP.

The results of the study will help to inform better management of the neurological complications of TTP.
TTP patients have been involved in designing this study led by The Royal Liverpool University hospital from the outset. When asked what TTP research was important to them, patients raised this as an area where they felt more knowledge was needed to improve care.

The study includes not only patients with a new diagnosis of TTP, but also patients who have been diagnosed with TTP and are undergoing follow-up. The study is questionnaire based and ask questions about memory, concentration, mood and quality of life. Questionnaires can be completed by patients and healthy volunteers (non-blood relatives, friends or carers of patients – as a comparison) at 6-12 monthly intervals over a period of approx. 2 years.

Any hospitals treating patients with TTP in England, Scotland or Wales can participate in the study once the necessary approvals are in place. The study is simple to set up, take part in and does not require any extra visits to hospital or blood tests.

If you are a patient with TTP and you are interested in getting involved, please speak to your local TTP Consultant/Team and ask them to contact Dr Tina Dutt and Dr Rebecca Shaw for further information.

Many books have been written on how to deal with grief and loss. In our darkest and bleakest moments, we can pick up one of these books and try to make sense of how we should behave or feel following the death of a loved one.

We can learn about the process through which we pass: the stages or cycle of bereavement involving grief, denial, shock, anger and eventually acceptance, of some sort. Does this really help? Some of us may think we’re abnormal if we don’t pass through this cycle, yet others think they’re abnormal if they get stuck and yo-yo backwards and forwards through the circle and never get on the road to recovery. We may worry about things said, or unsaid, actions taken or not taken and regret that these things will never be put right.

Loss affects all of us at some stage in our lives and for every loss we suffer, we may handle it in a totally different way depending on the relationship to the loss, whether it is a close family member, a friend, a colleague or a pet.

It is important to acknowledge your loss, give yourself permission to feel and understand that whatever you feel is right for you and you alone. To recover from a loss takes as long as it takes, there is no right or wrong way.

Lynda, Samaritan.

TTPNetwork 25th Anniversary Event

See how our 25th Anniversary was celebrated in May 2023

TTPNetwork Webinar 6 – Gene Therapy, Robyn Bell 12th Jan 2022

Watch our January ’22 webinar. Research Scientist, Robyn Bell tells us about Gene Therapy and what opportunities it might present for the treatment of TTP.

TTPNetwork Webinar 5 – Prof. Scully: TTP the low down October 6th 2020

Webinar 5 of the COVID Lockdown series. Professor Scully gives us the low down on TTP and answers patient questions. This recording has been edited at the request of Prof. Scully.

TTPNetwork Webinar 4 – CNS Joanne Bell 3rd Aug 2020

CNS Jo Bell, the role of the Clinical Specialist Nurse for TTP.

TTPNetwork Webinar 3 – Prof Marie Scully 30th June 2020

This is the 3rd Webinar in our series. Professor Scully talks about Research and Clinical trial in TTP in the context of TTP in the UK.

TTPNetwork Webinar 2 – Dr Dutt 9th June 2020

Dr Dutt talks about Neurological complications in TTP. This video has been edited to remove the Q&A session. Take full advantage of the Q&A’s by attending our webinars in person.

TTPNetwork Webinar 1 Prof Scully TTP&COVID19 18th May 2020

Recording of the first TTPNetwork Webinar that took place on the 18th May 2020 during the COVID19 Lockdown. Prof Marie Scully talks about COVID19 and TTP and during her talk answers some...

What is the TTP Registry?

Download this information leaflet to find out more about the UK TTP Registry.

Key Points

Speak to your specialist team if you have any concerns.
Don't put pressure on yourself to be back to your old self immediately.
Keep up with your TTP Clinic appointments.

Lifelong monitoring is essential

Once the TTP has been stabilised you will be discharged home. This will usually be once your platelets are within the normal limits and plasma exchange has stopped.  You will still have regular check ups with your specialist TTP team and these could range from every week, two weeks or month, through to 6 monthly and sometimes even a year.  The regularity is dependent on your individual condition and situation.

Take it easy and don't put pressure on yourself to be back to full strength immediately. Gradually ease into your old routine, take regular breaks and rest periods.  Ask for, and accept offers of help from friends, family and your employers.

You may have feelings of overwhelm, or anxiety and this is normal.  You may have been offered some counselling while in the hospital or in the follow up clinic.  If you feel you would benefit from this service as an outpatient locally to where you live, then please speak to your specialist TTP nurse.  Each specialist TTP centre has a psychiatrist working with them for the benefit of TTP patients.

At a glance

You will be discharged home when your platelet count is within normal limits and plasma exchanging has stopped
Take it easy and gradually ease into your old routine. Accept offers of help from friends and family
Everyone is different but some people feel a little overwhelmed - This is normal!


Medication

You will be given some medication to take home. This will probably be:

Aspirin – to help make your blood less sticky
Ranitidine (or similar) – to protect the lining of your stomach if you are taking Aspirin
Folic acid – to speed up the red cell production if you are still anaemic

Most people generally have these but some additional medication may be supplied if necessary.

Dos & Don'ts

DON’T start any new medication without contacting your consultant first, including the contraceptive pill and malarial tablets
DON’T believe all you read on the internet about TTP or the treatments. Not all this information is from reliable sources or up to date.
DON’T feel that you are being silly if you have any questions – please contact your TTP specialist nurse or consultant.
DO check with your consultant before you travel abroad; there are specialist insurance companies that will insure you at reasonable rates.
DO speak to your Consultant Hematologist if you are considering starting a family.

Feeling Unwell?

When you first go home you should expect to feel tired, but there are some things to look out for. If you have:

Headaches not relieved by paracetamol.
Blurred vision, dizziness or confusion.
Easy bruising without obvious cause.
Dark urine.
Feeling unwell and are worried.

Call your TTP nurse specialist or the hospital who may have also given you a help line number. In the majority of cases you will be absolutely fine and most people do not relapse. Ask for a blood test if you still feel worried.

Further Reading

Blogs

Advice from TTP Clinical Specialist Nurse Ros Newton

We asked TTP Clinical Specialist Nurse Ros Newton about what patients should expect after leaving hospital and beyond:

Have a question for us?

Are you a TTP patient? Or perhaps a family member or close friend of someone diagnosed with TTP?
Are you a healthcare professional who wants to know more about our work?

Whoever you are, get in touch. We'd love to hear from you.