Preventative & Vigilant Care

Preventative & Vigilant Care - An Overview

General Care

Patients with Wiskott-Aldrich Syndrome are encouraged to live as normal a life as possible.   Patients are encouraged to living a balanced life with good nutrition, exercise, adequate rest and the formation of good habits.  Infections and injuries should be attended to promptly, even if they seem minor,  and further medical attention given as needed.

In addition to their medical needs, it is important to attend to their psychological and emotional needs as well.  The child's physicians and teachers can help the parents in gauging their needs at different ages.  They can also help counsel the child as and when a situation arises.  Some measures can be taken to help alleviate the difficulties that these children experience.  Having a close knit and supportive group of friends can restore a sense of normalcy and help them develop confidence in themselves.  It is important for the parents to do this as well, whether it is through their church, school or neighborhood.  A closely knit support group helps ease the stresses of the disease.  If possible, it is good to have these children involved in activities that can help relieve stress.  It could be through music, art, yoga, meditation, or just participating on a regular basis in an activity that they enjoy.  Some children may benefit from having a counselor whom they can see on a regular or on an " as needed" basis.  Some children can try to "protect" their parents from the difficulties they are facing and internalize their feelings and fears.  They may be more comfortable expressing some of these concerns to someone outside the family.  The counselor can then help the child and the parents better cope with the disease.   

Find out more about Preventive and Vigilant Care:

Prevention of Bleeding

Management of Bleeds and Injuries

Platelet Transfusions

Splenectomy

Immunization

Prevention of Infection

Skin Care

School and WAS




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