Thrombotic Thrombocytopenic Purpura (TTP) and its impact on patients' mental health
Published 28 Feb 2023 • By Nada Doukkali
Thrombotic Thrombocytopenic Purpura (TTP) is a rare haematological condition. Just like any other chronic disease, it can have a significant impact on the mental health of those affected.
To what extent is this disease an emotional burden for patients?
Read our article to find out!
What is Thrombotic Thrombocytopenic Purpura (TTP)?
Thrombotic Thrombocytopenic Purpura (TTP) is a disease belonging to the family of Thrombotic Microangiopathies. It is caused by deficiency of a protein called ADAMTS13. The absence of this protein leads to a decrease in the number of platelets in the bloodstream, associated with the formation of small blood clots that clog small blood vessels, called capillaries.
This condition can have two etiologies: it can either be caused by a genetic alteration that prevents the synthesis of the ADAMTS13 protein, as in the case of congenital TTP (also known as Upshaw-Schulman Syndrome), or have an autoimmune origin, as in the case of acquired TTP (also called aTTP),when the body produces anti-ADAMTS13 antibodies that induce its destruction.
The most common symptoms of TTP occur episodically, during periods of relapse. The disease mainly causes haematological damage, such as formation of haematomas or extensive red patches under the skin (purpura), but also neurological or digestive symptoms (nausea, vomiting).
What is the impact of Thrombotic Thrombocytopenic Purpura (TTP) on patients' mental health ?
In addition to the difficulties associated with the disease itself, patients suffering with chronic conditions such as Thrombotic Thrombocytopenic Purpura (TTP) are often faced with treatment burden. Indeed, the constraints of a long-term treatment such as regular and frequent medical appointments, access to treatment, self-monitoring of one's own symptoms, regular intake of medications and their various side effects, represent a significant mental burden and can have a negative impact on symptoms remission. According to a French hospital study, about 38% of patients with chronic diseases consider the treatment burden to be unbearable in the long term.
Thrombotic Thrombocytopenic Purpura (TTP) is a disease that evolves according to the blood level of the ADAMTS13 protein. When it is above a certain threshold of activity, the disease is at an "asymptomatic" stage. Below this threshold, and in certain high-risk situations (such as pregnancy), there is a possibility of a relapse, which can quickly lead to complications such as coma or even death.
Patients are in constant fear of such episodes. The relapses themselves are particularly challenging and can be life-threatening. For patients in remission, the possibility of a new relapse can be a major source of stress.
Moreover, the recurrence of symptoms and their management is a particularly exhausting period for a patient, and has a significant impact on his or her mental health: according to a study published in the journal Hematologica in 2020, it is estimated that almost 20% of patients show signs of clinical anxiety and that around 40% of patients suffer from depression.
Thrombotic Thrombocytopenic Purpura (TTP): how to reduce its impact on patients' mental well-being?
The impact of the relapses of Thrombotic Thrombocytopenic Purpura (TTP) on patients' psychological well-being is not to be taken lightly. So if you suffer from TTP, you should know that taking care of your mental health is as important as treating the physical symptoms of the disease itself. Here are some tips for taking good care of your mental health:
Discuss the psychological impact of the disease with your care team
Don't hesitate to be transparent with your GP or specialist if you are having difficulty managing your illness, or if your situation is too overwhelming for you. They will be able to offer appropriate support, help you monitor the risk of anxiety or depression, and find solutions.
Make sure you have a good-quality sleep
There is a strong link between poor sleep quality and altered mental health, including the appearance of depressive episodes or signs of stress. Conversely, anxiety and depression can have a negative impact on sleep. So getting enough sleep can help break this vicious cycle. For example, consider establishing an evening routine that includes calming down an hour before bedtime, limiting light sources, screen time, coffee, tea or energy drinks, or stimulating physical activities.
Eat a healthy and well-balanced diet
It has been shown that there is a link between nutrition and psychological well-being. According to an article in the British Medical Journal, it has been shown that adopting a healthy diet is associated with a reduced risk of depression. A link has been found between the onset of depressive disorders and the consumption of foods with a high glycaemic index, and in particular of refined sugars. And although the links between diet and mental health are complex and are being studied by many researchers, experts agree that a Mediterranean-style diet is associated with an overall improvement of mental health. However, you should avoid foods that may influence blood clotting, such as onions, garlic, or blueberries, and consequently have a deleterious effect on the disease.
Maintain your social ties
Following the global Covid19 pandemic of 2020, a study published in The Lancet in 2021 shows that isolation and confinement measures have led to an increase in anxiety and depression disorders worldwide. Social contact is therefore very important in maintaining psychological well-being. In addition, when you have a chronic illness, being surrounded by friends and family, and receiving support from people you trust helps you deal with the stress of certain uncomfortable situations and to approach difficulties with more serenity. There are also patient associations and support groups created specifically for Thrombotic Thrombocytopenic Purpura (TTP), whose aim is to accompany and support you, as well as to enable you to communicate with people who are going through the same as you.
Find time for a physical activity you enjoy
According to the WHO, physical activity improves the overall sense of well-being, and has a positive impact on depression and anxiety. It is recommended to be physically active daily for about 30 minutes. This can include different types of sports, but also walks, household chores, commuting, etc; it is however recommended to avoid sports which have a higher risk of causing injuries, as they are not compatible with TTP. More gentle activities, such as Pilates or yoga, can be a great choice. The latter, which is sometimes combined with meditation, can be extremely beneficial for mental well-being.
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Life with TTP - Understanding TTP
Monitoring TTP - Understanding TTP
Long-term neuropsychological sequelae, emotional wellbeing and quality of life in patients with acquired thrombotic thrombocytopenic purpura - Riva et al., PubMed
Cerebral MRI findings predict the risk of cognitive impairment in thrombotic thrombocytopenic purpura - Alwan et al., British Journal of Haematology
Purpura Thrombotique Thrombocytopénique - MSD Manuals
Purpura Thrombotique Thrombocytopénique - Orphanet
Prevalence of neuropsychiatric symptoms and stroke in patients with hereditary thrombotic thrombocytopenic purpura - Borogovac et al., Pubmed
Etude ComPaRe sur le "fardeau du traitement" : près de 40% des patients chroniques estiment ne pas être en mesure de supporter, sur le long terme, la charge de leurs soins - APHP
Sommeil : faire la lumière sur notre activité nocturne - Inserm
Sommeil et stress, les carnets du sommeil - Institut du Sommeil et de la Vigilance
Les 10 bonnes habitudes à adopter - Fondation Sommeil
La santé mentale se lit dans l'assiette ? - Anxiété.fr
Food and Mood: how do diet and nutrition affect mental wellbeing? - The British Medical Journal
Activité physique - Organisation Mondiale de la Santé
Santé mentale et lien social - Education Santé
Global prevalence and burden of depressive and enxiety disorders i 204 countries and territories in 2020 due to the COVID19 pandemic - The Lancet