The outbreaks linked to the autoimmune disease, or the constraints of the treatments can disrupt the family or professional life of the parents, with the need for sometimes unforeseen consultations, urgently, or very rarely prolonged hospitalizations. The quality of life is often preserved; As with any long-term illness, maintaining the life plan of the child and his family in complete safety is a priority for all stakeholders.
Even if platelets remain low, ITP does not prevent normal life. It is quite possible to walk, run, go on a trip, play sports (see below) or drive a car like everyone else. On the other hand, you should avoid taking a drug (especially aspirin, anti-inflammatory, anticoagulant, etc.) without having discussed it beforehand with your referring doctor, consuming alcohol in large quantities, or practicing activities with the risk of shocks, as this can increase the risk of bleeding. Children and adults alike feel a state of fatigue at the time of flare-ups, when platelets drop.
For young girls, the first rules should be anticipated with the hospital pediatrician hematologist, the attending physician and possibly a gynecologist. For women of childbearing age, it is advisable to talk to a specialist doctor if you want to become pregnant. The fact of having had an ITP is not in itself a contraindication to pregnancy, it is preferable to start a pregnancy if the disease is stable or well controlled, and certain treatments for chronic ITP should be avoided during pregnancy. (see “Pregnancy and ITP” tab).
Anemia, when it is significant, or hemolysis flares, even well compensated for, can lead to a state of fatigue making it difficult to attend school or to continue working. Schooling is sometimes discontinuous. Work stoppages of varying lengths, or even retraining, may therefore be necessary.
The consequences of an AHAI on family and social life are essentially linked, for people treated with corticosteroids for an often long period of time, to the need to modify their eating habits in order to respect the diet limited in salt and fast sugars, rich calcium.
For women of childbearing age, it is advisable to talk to a specialist doctor if you want to become pregnant. The fact of having had an AHAI is not in itself a contraindication for pregnancy, but you should avoid becoming pregnant if the disease is not well controlled and if the dose of corticosteroids is still high.
The risk of infection in autoimmune neutropenia does not prevent you from leading a normal life. Infections, when they occur, are mainly linked to microbes that the patient carries on the skin, mucous membranes (mouth, ENT tract, bronchi, seat, digestive tract). In case of fever or infectious concern, a doctor who is aware of the disease must be consulted, so that anti-infective treatment can be started without delay.
Even if the number of polynuclear is very low, community life is possible. Direct contact with infected people during epidemics (influenza, chickenpox, gastroenteritis, etc.) must be avoided. At certain times, the specialist doctor may recommend temporarily avoiding supermarkets and communities (school, public transport, etc.).
For children of school age, normal schooling can still be ensured and arranged thanks to an individualized reception project (PAI) which informs school staff about the disease and its possible risks (pai_ahai-vf; pai_pti-vf). It is an agreement involving the family, the school and the school doctor, making it possible to meet the needs of the child and to inform teachers about the child’s illness. In very rare cases, home schooling may be provided at certain times if the treatment forces the child not to be able to attend school.
It is intended to facilitate the continuation of normal schooling when a child has a long-term illness. It is drawn up at the request of the family, by the director of the establishment in consultation with the school doctor. It takes into account the medical recommendations of the hematologist and precisely describes the emergency circuits and emergency procedures. Writing the IAP can facilitate communication between family, doctors and teachers on the condition that this document is written with the will to reassure and reconcile, and to allow the child to lead a close school life in complete safety. from normal.
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Regarding the practice or resumption of a sporting activity, this can only be considered gradually and once the anemia has been corrected under treatment. The practice of regular physical activity is recommended, it helps to avoid deconditioning during effort, and improves the tolerance of prolonged treatments, for example with corticosteroids.
Above 50,000 platelets / mm3 there are no particular risks involved in physical or sports activity. Below 50,000 platelets / mm3, it depends on the sporting activity that the child or adolescent wishes to practice. There is no real limitation for sports that are not at risk of trauma (swimming, aqua-gym, fitness, etc.). On the other hand, sports such as football, handball, basketball, martial arts or cycling should be avoided. For situations with a risk of falls limited in time, such as a ski trip, for example, you must discuss this with your doctor beforehand.
The O’CYTO association provides a booklet entitled “Sport and PTI: Having immunological thrombocytopenic purpura and playing sports like the others” (Sport and PTI booklet) and works in close collaboration with a teacher in adapted physical activities who can help the patient and his family in choosing and organizing the desired physical activity (firstname.lastname@example.org).
The manifestations of ITP, AHAI or Evans Syndrome are very different among young people and more or less restrict the practice of sport. Some will not need accommodations, while others will depend on them if they want.
participate fully in all activities. In cases where arrangements
are necessary, adaptation solutions allowing a safe practice
are often possible.
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