We will post opportunities to take part in research here
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
One of our brilliant Trustees, has developed a website to help with travel after illness. Visit the Your Travel and Health website. The go-to website for travelling. Note: The website you are entering may contain affiliate links, meaning commission is paid to the owner of the website if you make a decision to purchase through their links. Please read their disclaimer.
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All information contained on this website is subject to our Disclaimer policy. For our full Disclaimer please click here.
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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.
The two main types of TTP are acquired TTP and congenital 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.
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.
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.
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.
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/
Everything is fine in moderation.
If you are concerned speak with your TTP Team
once in remission dental care and medical procedures are usually fine. Speak to your TTP team first as check on bloods maybe useful first.
A leaflet explaining the role of the TTP Psychologist
Who's who in the National Psychology service for TTP patients - find the Psychologist for your centre.
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.
For help and advice contact the following organisations:
A short film, made by patients for patients with rare blood condition thrombotic thrombocytopenic purpura - TTP
CNS Lead Ros from UCLH talks to us about Relapses in TTP.
Clinical Nurse Specialist Ros talks to us about treatment for TTP since the condition it was first identified in 1924
We hear from Eike and Eliane, two of the TTP Specialist Centres Psychologist. What can you expect from the service? Watch and find out!
Hear from Dr Will Leicester who leads the Birmingham TTP Specialist Centre as he tells us about TTP.
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.
Fill in the form and customise your free, digital TTP patient ID card to download and save to your Apple Wallet or Google Wallet.
Click the button below to get yours.
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 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.
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.
