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 email@example.com
At first I thought I had a bad cold and sleeping a lot, and then getting chest pains and my urine...
I was honoured to be asked to write a few words for the TTP Network pages about me and my TTP journey
This is me and my story with TTP (hoping this will help anyone who’s new to this situation because we all know how scary this disease can be at first) and to help me to get it off my chest as I...
One Year On… Sitting on the plane yesterday, flying back from Iraq, I vividly recalled a simila...
Hi, my name is Jamie and I was diagnosed with TTP in July 2016. At the time I was 44 years of age...
In 1995, aged twenty-four, Jo was diagnosed with a rare blood condition Thrombotic Thrombocyto...
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 2, 2024
Targeted ADAMTS13 Replacement Therapy for Thrombotic Thrombocytopenic Purpura
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
November 5, 2020
Management of thrombotic microangiopathy in pregnancy and postpartum
American Society of Hematology
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.
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.
For help and advice contact the following organisations:
See how our 25th Anniversary was celebrated in May 2023
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.
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.
CNS Jo Bell, the role of the Clinical Specialist Nurse for TTP.
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.
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.
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...
Download this information leaflet to find out more about the UK TTP Registry.
Lifelong monitoring is essential
You may have been offered some counselling while in the hospital. If you feel you would benefit from this service as an outpatient locally to where you live, then please speak to your specialist nurse or GP. Remember you are not alone
At a glance
You will be given some medication to take home. This will probably be:
Most people generally have these but some additional medication may be supplied if necessary.
When you first go home you should expect to feel tired, but there are some things to look out for. If you have:
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.