Listen to patients and healthcare professionals from Austria, Belgium, Bulgaria, Canada, Germany, Romania, Spain, Sweden, Israel, and the United Kingdom tell their stories about TTP:
Patient registries are a very important tool for us physicians and national registries should be implemented in all countries. However, to be relevant, registries need to be updated regularly, which can translate into an additional burden for healthcare professionals.
University Hospital La Fe, Spain
Home About TTP Recommendations Policy Advisory Board Testimonials References In England, the existence of guidelines developed by the NHS and the set-up of 10 specialised Referral centres have substantially improved TTP patients’ journey. This provides the centres with the best tools and mechanisms to take care of patients in a holistic way.
University College London Hospitals, United Kingdom
We need more patient and healthcare professionals’ knowledge of what TTP is and related symptoms. Patients should be empowered and have more awareness of their disease and possible symptoms, in order to monitor them and to react as quickly as possible when an episode starts. Early diagnosis is key to provide patients with the adequate treatment as soon as possible. For that, ADAMTS13 levels and other related markers should not only be tested when patients are presenting symptoms, but on a regular basis to ensure patients monitoring and early diagnosis in case there’s a new episode.
AnsweringTTP, Canada
I have had a recurrence of TTP five times. Before the first three recurrences we only tested for platelets. This test only indicated that I did or didn’t have TTP, but gave no warning. Before the fourth time, we also tested for ADAMTS13, but it took many weeks to get the result back. Before my sixth time, not only did we test, but we also had a plan in the event that ADAMTS13 activity levels dropped. We almost avoided TTP, but I think we reacted too late. All patients are different, so we keep on learning.
I personally had my first TTP episode triggered by a pregnancy. It was manifested by a heavy bleeding, which is kind of common during pregnancy and often considered a Disseminated Intravascular Coagulation (DIC syndrome). I had to undergo an abortion because of that. The proper diagnosis has been neglected as no one ever suspected the bleeding was of a hematologic origin and was considered pregnancy related with the focus being more on the pregnancy rather than the cause of the low thrombocyte count. Three years after the first episode, I was following hormone replacement therapy (HRT) to prevent the growth of an ovarian cyst. This HRT has provoked a very severe life-threatening relapse. In other words, both episodes have been linked to gynaecological triggers. Gynaecologists need to understand the disease and be aware HRT might cause serious hematologic conditions and that pregnancy itself might provoke a TTP episode in a certain subset of women. Despite the fact TTP is a rare disease, awareness is crucial as it might impact not only womens’ lives but also the proper development of the fetus and the birth of a healthy child.
Bulgarian Association Moschcowitz Syndrome, Bulgaria
For TTP, as for all rare blood disorders, the lack of knowledge about the disease is what leads to long pathways of diagnosis. Developing guidelines would help to have a framework, where the main diagnosis tests and main symptoms are outlined. In this way, even a general practitioner would know how to better help his patient.
Developing education programmes to raise awareness of TTP among healthcare professionals is an absolute priority, focusing on general practitioners, neurologists and emergency units, as these are the first practitioners patients will see. Education of healthcare professionals is key to ensure optimal care and early diagnosis of TTP.
Medical University of Vienna, Austria
Multidisciplinary teams should become the norm when treating TTP patients. The team in my centre includes haematologists, laboratory specialists, cardiologists, and members of the intensive care unit. The team also collaborates closely with gynaecologists when the patient is a woman. Communication and close coordination between the team are key, which is why we have also put in place an internal procedure to be followed as soon as TTP is diagnosed, to ensure the patient is taken care holistically.
In my centre, our primary care physicians have been trained in TTP early recognition and awareness, which has helped in early diagnosis of the disease, which is crucial for patients.
Soroka University Medical Centre, Israël
The role of patient organisations is essential when a patient receives a TTP diagnosis. Information about peer led support groups should be provided to patients at the earliest opportunity. This will enable the patient and their loved ones to make contact and receive support from the patient group and their community at the time they need it most. In other words, it should be part of the basic standard of care to refer patients to advocacy and support groups.
United Kingdom
Information is key for patients. In Germany we have regional representatives who have the right knowledge and information about blood disorders. This is crucial for patients as they can turn to their regional representatives to ask questions about their disease or to simply keep in contact, which helped quite a lot during the COVID-19 pandemic.
DHG e.V., Germany
Being diagnosed with TTP is lifechanging, as it impacts patient’s lifestyle, quality of life and even your professional life. Most TTP patients cannot simply go back to their previous job and need to adapt to their new reality. This also has an impact of patients’ mental health as they feel they don’t contribute to society the same way. Gergana Sandeva TTP has a different face for each patient, but the common element is the impact on patients’ everyday life. This can be tiredness, confusion, concentration loss, headaches or poor mental health. In addition, patients can also live with secondary effects from the medication they take for these associated symptoms. In my case, I’ve a knee protheses following cortisone intake.
TTP Community, Belgium
TTP has a different face for each patient, but the common element is the impact on patients’ everyday life. This can be tiredness, confusion, concentration loss, headaches or poor mental health. In addition, patients can also live with secondary effects from the medication they take for these associated symptoms. In my case, I’ve a knee protheses following cortisone intake.
Kevin Claes