Carers: how to better support loved one suffering with TTP?
Published Jan 26, 2023 • By Nada Doukkali
Thrombotic Thrombocytopenic Purpura (TTP) is a rare bleeding disorder. Patients with this condition can have very different profiles and sometimes may need help from their family members or friends with everyday activities as well as with their medical care. These family members (or friends, or neighbors), known as carers, are an essential part of the patient's care pathway and can be vital to their well-being.
What is it like being a caregiver for a patient with TTP?
We explain it all in our article!
Thrombotic Thrombocytopenic Purpura (TTP) is a rare blood disorder. It is characterized by a low level of platelets in the bloodstream, which are essential needed for clotting. This happens because of an ADAMTS13 deficiency (an enzyme). Low levels of this protein lead to the formation of small clumps of platelets, which prevents them from circulating freely in the blood. TTP can be either congenital (genetic disease) or acquired during life.
Patients with Thrombotic Thrombocytopenic Purpura (TTP) have symptoms, which can be quite diverse: visual disturbances, headaches, hematoma formation for no particular reason, etc. It is important to anticipate and assess these conditions, as their symptoms can quickly lead to more serious complications, such as internal bleeding, which can lead to coma or even death.
It is these episodes that are targeted by medical care. The aim is to regularly monitor biological constants like levels of ADAMTS13, and to prevent and eliminate the risk of relapses with special dietary measures and close medical monitoring. This lifestyle can be particularly challenging for patients, who often need the support of a family member or a close friend.
Different types of carers
A carer is a person who regularly helps, partially or totally, a person who has lost/is losing his or her independence, whether due to age, disability or a serious and/or chronic illness. A distinction is made between:
- Professional (or paid) carers, whose job is to provide support to dependent patients (nurses, household help, etc.)
- Informal, unpaid carers (also known as informal carers) are those close to the person (often family members, friends or even neighbors), who has lost their independence, partly or entirely.
Informal carers have no legal status, but are often defined by their emotional (family member, friend, etc.) or geographical (neighbor, etc.) link with the person they care for. They provide assistance, which may be temporary or permanent, in several aspects of the dependent person's life, such as help with medical care, administrative procedures, daily activities, and even give psychological support. Their importance is recognized by healthcare professionals, and their role in the care pathway of their family member or friend who suffers with a chronic disease such as TTP is essential.
How can you help a person affected by TTP?
TTP is rare diseases, which few people talk about. Patients with this condition often need support in managing the disease. Here are some examples of how a carer can support a sick family member or friend:
- Get informed about the disease. In order to better understand the person you care for and the difficulties they face in their daily lives, it is necessary to find out as much as possible about the condition they are suffering from.
- Learn to recognize the symptoms of a relapse. Relapses of TTP are medical emergencies, which can lead to serious complications. Symptoms such as headaches, confusion, red or purple patches on the skin (petechiae, purpura), digestive problems, or blood in the urine are warning signals that should be spotted and dealt with as quickly as possible so as to reduce the risk of life-threatening complications.
- Communicate with the nursing staff. It is sometimes difficult for the patient to identify his or her needs and to create a link with healthcare professionals. This is the case, for example, for young patients with congenital TTP. In this case, it is common for the patient-carer relationship to be provided by someone close to the patient (in this example, a parent). In this context, good communication with the healthcare staff allows for the most appropriate treatment and follow-up of the condition. Asking questions also helps to better understand the disease, and to reduce anxiety linked to the diagnosis or to lack of understanding of certain aspects of the care plan.
- Help to set up daily management of the disease. A carer can also help by guiding the patient through the various stages of their care pathway, whether it is making medical appointments or preparing for their treatment procedures. To do this, it is advisable to have a good understanding of the different issues related to treatment.
- Provide emotional support. It is sometimes hard for patients to endure the consequences of the disease. Relapses can be particularly tiring, causing stress and anxiety. It is therefore important for patients to feel supported on the emotional level, so that their mental health remains in good condition.
Family carers are key players in providing this kind of support.
Carers' health: make sure not to forget about yourself!
Although caring for a loved one is very rewarding, the position of carer can quickly become extremely demanding: there are many accounts of the impact of a loved one's illness on the professional and personal lives of carers. In addition, a study conducted by the Association des Aidants de France in 2015 indicates that almost half of all carers develop medical problems that they did not have before they started caring for their loved one. These include sleep disorders, physical pain, anxiety and depression.
In order to be able to provide the best possible support to a sick family member or friend, it is important to take it easy as a carer and to take care of your own health and mental well-being. Carers should not forget to schedule regular check-ups with their GP, as well as to maintain a healthy lifestyle, despite the lack of time they may experience: keep up regular physical activity and eat a balanced diet, take time out, and do not neglect your sleep or your social life in order to avoid isolation. There exist various support groups for carers who care for people with specific conditions, like Alzheimer's, Parkinson's disease, stroke, dementia, mental illnesses, etc: on this website you can find a list of such support groups. There are also different Facebook groups where carers can connect with each other, help with advice, support, share experience, etc: Caregiver Support Community, Caregivers Connect, and many others.
Share your thoughts and questions with the community in the comments below!
Supporting your loved ones - Understanding TTP
Qu'est-ce qu'un aidant ? - Chorum, groupe Vyv
Family Caregiver Toolbox - Caregiver Action
Association Française des Aidants
Expectation of patients and caregivers about patient education for immune thrombocytopenia - National Library of Medicine
Répit des aidants, note de cadrage - HAS
Caregiver Support - Platelet Disorder Support Association