Prognosis
Future Prospects
. What will the future hold for someone with SCID?
A patient with SCID need all the support and love that parents and siblings can provide. Parents and family members are very much affected by the disease also. Parents need to learn to handle the anxiety and stress that may be present in their life. Parents also need to spend energy in maintaining their own relationship with each other. If the stress of the child’s illness and treatment destroys the family structure, a cure of the patient with SCID will not constitute much happiness. Families and the patient with SCID will need to be carefully maintained and cared for at home and in the hospital setting. Children with SCID without consent from their doctor are not allowed to be in contact with other children whether at a playground, school, or even at home with siblings. Siblings who attend school may also be in contact with other children which is dangerous especially when the case of the pox makes its way into the schools. Parents must alert the school authorities of the situation. These situations may sound very unfortunate but the situation does not need to be handled as if the child is "toxic". This may lead to depression or neglect. Isolation procedures like the wearing of masks or gowns by the parents is not necessary but hand washing consistently is a must. Nutrition is also very important. Some children with SCID cannot absorb food normally, which can lead to poor nutrition. Maintaining good nutrition is necessary for children who might have lost their appetite due to their sickness. SCID will not restrict the child from living a happy life. Its best if family members and friends continue to treat the child with love and kindness. Like many diseases and sicknesses, Patients are able to overcome with good faith and love.
What methods of treatment assist in the care and maintenance of this disorder?
The most effective treatment for SCID is a bone marrow transplant. Bone marrow stem cells can live for a long time by renewing themselves and can produce healthy immune cells. A bone marrow transplant from a tissue-matched sister or brother offers the greatest chance for curing SCID. If siblings are not available the parent or unrelated person must donate. The bone marrow transplant is the most effective because essentially they will stimulate the production of new immune cells. A transplant don in the first months of the newborns life is most successful.
What is the life expectancy of a patient with SCID?
Life expectancy without a successful stem cell transplant, enzyme replacement therapy or gene therapy with a constant risk for severe or fatal infections sadly may not live past age 2 which is the age patients rarely live up to. Fortunately, because of recent technology and Campaigns, patients are living older and happily. New treatments such as bone marrow and stem-cell transplantation save as many as 80% of SCID patients and Campaigns such as the SCID Newborn Screening Campaign which added screening for SCID to the core panel for universal screening of all newborns in the United States. So all newborns which have to be screened are also screened for SCID. This increases life expectancy for children who's family does or did not have enough money fro SCID screening. Life expectancy is a very serious and many times saddening thought, but time spent with family and loved ones make those small or large years count.
A patient with SCID need all the support and love that parents and siblings can provide. Parents and family members are very much affected by the disease also. Parents need to learn to handle the anxiety and stress that may be present in their life. Parents also need to spend energy in maintaining their own relationship with each other. If the stress of the child’s illness and treatment destroys the family structure, a cure of the patient with SCID will not constitute much happiness. Families and the patient with SCID will need to be carefully maintained and cared for at home and in the hospital setting. Children with SCID without consent from their doctor are not allowed to be in contact with other children whether at a playground, school, or even at home with siblings. Siblings who attend school may also be in contact with other children which is dangerous especially when the case of the pox makes its way into the schools. Parents must alert the school authorities of the situation. These situations may sound very unfortunate but the situation does not need to be handled as if the child is "toxic". This may lead to depression or neglect. Isolation procedures like the wearing of masks or gowns by the parents is not necessary but hand washing consistently is a must. Nutrition is also very important. Some children with SCID cannot absorb food normally, which can lead to poor nutrition. Maintaining good nutrition is necessary for children who might have lost their appetite due to their sickness. SCID will not restrict the child from living a happy life. Its best if family members and friends continue to treat the child with love and kindness. Like many diseases and sicknesses, Patients are able to overcome with good faith and love.
What methods of treatment assist in the care and maintenance of this disorder?
The most effective treatment for SCID is a bone marrow transplant. Bone marrow stem cells can live for a long time by renewing themselves and can produce healthy immune cells. A bone marrow transplant from a tissue-matched sister or brother offers the greatest chance for curing SCID. If siblings are not available the parent or unrelated person must donate. The bone marrow transplant is the most effective because essentially they will stimulate the production of new immune cells. A transplant don in the first months of the newborns life is most successful.
What is the life expectancy of a patient with SCID?
Life expectancy without a successful stem cell transplant, enzyme replacement therapy or gene therapy with a constant risk for severe or fatal infections sadly may not live past age 2 which is the age patients rarely live up to. Fortunately, because of recent technology and Campaigns, patients are living older and happily. New treatments such as bone marrow and stem-cell transplantation save as many as 80% of SCID patients and Campaigns such as the SCID Newborn Screening Campaign which added screening for SCID to the core panel for universal screening of all newborns in the United States. So all newborns which have to be screened are also screened for SCID. This increases life expectancy for children who's family does or did not have enough money fro SCID screening. Life expectancy is a very serious and many times saddening thought, but time spent with family and loved ones make those small or large years count.