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SCID Videos

SCID Compass: Coping with Post-Treatment

For at least a few months after a bone marrow transplant, babies must stay in the hospital, and sometimes in a nearby patient residence, in order to have easy access to medical care during recovery. It’s important for families to develop routines and maintain a support system during that time. This video describes life in post-treatment for families of children with SCID who have undergone a bone marrow transplant.

Genetic Counseling_part of the SCID Compass Series

Receiving advice or support after diagnosis of a genetic condition can be overwhelming for families. One resource for information about the condition and for counseling related to living with the uncertainties and the concern about your child is genetic counseling. Genetic counselors work alongside your medical team to advise individuals and families affected by genetic disorders like Severe Combined Immunodeficiency, or SCID. Listen as Barbara Biesecker, Ph.D. shares her expertise in genetic counseling.

Importance of Long-term Follow-up after Treatment_ part of the SCID Compass series

Severe Combined Immunodeficiency, or SCID, is a life-threatening primary immunodeficiency, typically diagnosed at birth. Early detection is critical for these children, as is the prevention of infection and early treatment. With early treatment, most children with SCID should be able to develop their own working immune system. While most families tend to focus on the best course of treatment, such as hematopoietic stem cell transplantation or gene therapy, long-term care or follow-up is necessary to maintain a healthy life.

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