About Us
Specialist Centres
Contact Us


Have a question? You may find the answer here. If not, get in touch

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

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

November 7, 2024

Listening to patients at all levels of healthcare


May 2, 2024

Recombinant ADAMTS13 in Congenital Thrombotic Thrombocytopenic Purpura

paper by Prof M Scully et al. Published NEJM 2/5/24

April 21, 2024

Thirty years of experience with solvent/detergent-treated plasma for transfusion medicine

Sabrina E Racine-Brzostek, Melissa M Cushing, Michelle Gareis, Andrea Heger, Trupti Mehta

February 29, 2024

TTP Nurses - British Journal of Nursing

Clinical Nurse Specialists Jessica Bradbury and Jo Bell authored this article

February 13, 2024

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

Mouhamed Yazan Abou-Ismail, Chong Zhang, Angela P Presson et al

January 16, 2024

Shades of Grey-The brain in TTP

Tina Dutt, Cheng-Hock Toh

December 30, 2023

ADAMTS-13 conformation influences autoimmune recognition in immune thrombotic thrombocytopenic purpura

Mary I Underwood, Mari R Thomas, Marie A Scully, James T B Crawley

December 11, 2023

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

Hannan, Hamilton, Patriquin, Pavenski, Jurkiewicz, Tristao, et al

December 7, 2023

Psychometric evaluation of a patient-reported outcomes instrument for cTTP

Oladapo, Ito, Rodriguez, Philpott, Krupnick, Allen, Hibbard, Scully,Ewenstein

November 21, 2023

Targeted ADAMTS13 Replacement Therapy for Thrombotic Thrombocytopenic Purpura

Jonathan J. Moroniti1, John R. Vrbensky, Ishac Nazy, Donald M. Arnold

November 4, 2023

Alterations in the von Willebrand factor/ADAMTS-13 axis in preeclampsia

Neave, Thomas, de Groot, J Doyle, Singh, Adams, David, Maksym, Scully

October 20, 2023

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

Laure De Waele, Kazuya Sakai, Ilaria Mancini, György Sinkovits et al

October 12, 2023

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

Quintijn Bonnez,1 Kazuya Sakai,1,2 and Karen Vanhoorelbeke1,*

October 4, 2023

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

Mehmet Baysal, Fehmi Hindilerden, et al

September 18, 2023

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

Akiko Uchida, Kenji Tanimura, Yuki Sasagawa, Hirotaka Yamada, Yoshio Katayama, Masanori Matsumoto

September 14, 2023

Cardiovascular Disease and Stroke in Immune TTP-Challenges and Opportunities

Senthil Sukumar, Marshall A Mazepa, Shruti Chaturvedi

August 12, 2023

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

Nicholas C. J. Lee, Sean Yates, Siayareh Rambally, et al

July 1, 2023

Integrating psychology services for patients with thrombotic thrombocytopenic purpura: A specialist centre experience

Rebecca J. Shaw, Joanne Bell, Jason Poole, Conor Feely, James Chetter, Tina Dutt

May 23, 2023

How to approach acute thrombosis and thrombocytopenia

Jeremy Schofield, academic clinical fellow, Cheng-Hock Toh, professor of haematology

May 20, 2023

Drug-induced thrombotic thrombocytopenic purpura: A systematic review and review of European and North American pharmacovigilance data

Schofield, Hosseinzadeh, Burton, Pavord, Dutt,Doree,Lim, Desborough

May 5, 2023

Toward gene therapy for congenital TTP

Charlotte Dekimpe, Elien Roose, Kazuya Sakai, Claudia Tersteeg, Simon F. De Meyer, K Vanhoorelbeke

April 7, 2023

Thrombotic Thrombocytopenic Purpura

Michael Stanley; Robert B. Killeen; Joel M. Michalski.

March 10, 2023

ADAMTS13 activity testing: evaluation of commercial platforms for diagnosis and monitoring of thrombotic thrombocytopenic purpura

Singh, Subhan, de Groot, Vanhoorelbeke, Zadvydaite, Dragūnaitė, Scully

February 20, 2023

Autoantibodies enhance ADAMTS-13 clearance in patients with immune thrombotic thrombocytopenic purpura

Mary I Underwood, Ferras Alwan , Mari R Thomas , Marie A Scully , James T B Crawley

January 20, 2023

A 'needle in a haystack': Drug-induced thrombotic thrombocytopenic purpura-Association or causality?

Marie Scully

December 1, 2022

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

Marie Scully Javier de la Rubia Katerina Pavenski Ara Metjian Paul Knöbl et al

March 11, 2022

Mind and matter: The neurological complications of thrombotic thrombocytopenic purpura

Rebecca J Shaw, Tina Dutt

November 5, 2020

Management of thrombotic microangiopathy in pregnancy and postpartum

Fadi Fakhouri, Marie Scully, François Provôt, Miquel Blasco, Paul Coppo, et al

October 22, 2020

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

Ferras Alwan, Dina Mahdi, Sarrah Tayabali, Lisa Cipolotti, Grace Lakey, Harpreet Hyare, Marie Scully

Delayed normalization of ADAMTS13 activity in acute thrombotic thrombocytopenic purpura in the caplacizumab era

Prasannan, Thomas, Stubbs, Westwood, de Groot, Singh, Scully

Peak ADAMTS13 activity to assess ADAMTS13 conformation and risk of relapse in immune-mediated thrombotic thrombocytopenic purpura

Prasannan, Dragunaite,Subhan, Thomas, de Groot, Singh, Vanhoorelbeke, Scully

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.

Icon - Elements Webflow Library - BRIX Templates

Are there different types of TTP?

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

Icon - Elements Webflow Library - BRIX Templates

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.

Icon - Elements Webflow Library - BRIX Templates

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.

Icon - Elements Webflow Library - BRIX Templates

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.

Icon - Elements Webflow Library - BRIX Templates

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.

Icon - Elements Webflow Library - BRIX Templates

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:

Icon - Elements Webflow Library - BRIX Templates

Can I drink alcohol with TTP?

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

Icon - Elements Webflow Library - BRIX Templates

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.

Icon - Elements Webflow Library - BRIX Templates

National TTP Psychology Service

Who's who in the National Psychology service for TTP patients - find the Psychologist for your centre.

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 Webinar 8 - TTP Then and Now

Clinical Nurse Specialist Ros talks to us about treatment for TTP since the condition it was first identified in 1924

TTPNetwork Webinar 7 - Psychology Service at TTP Specialist Centres

We hear from Eike and Eliane, two of the TTP Specialist Centres Psychologist. What can you expect from the service? Watch and find out!

Dr Will Leicester Explains TTP at our 25th Anniversary Event

Hear from Dr Will Leicester who leads the Birmingham TTP Specialist Centre as he tells us about TTP.

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!


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


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.