1. You Can't Control Genetics
As is true with most genetic disorders, there is no way to prevent McCune-Albright syndrome. Most people's cells carry the same genetic information, no matter where in the body they are found. This means there is little, if any, variation of the DNA code in individual cells. In children with genetic disorders such as McCune-Albright syndrome, this is not the case. Children with McCune-Albright syndrome have a condition known as "mosaicism" in which there are two or more sets of genetic information in body cells.
MAS stands alone among genetic diseases. Many genetic disorders are hereditary, or passed down through parental DNA, and can be screened for with prenatal genetic testing. McCune-Albright, however, is not inherited. Instead, it's due to a spontaneous cell mutation during early fetal development. Because of this, the syndrome can neither be prevented nor the possibility of it detected. What can be done, however, is to prevent some of the complications that the syndrome can create.
2. Recognize the McCune-Albright Triad
McCune-Albright affects different children in different ways, depending on which cells carry the mutation, but there are three symptoms common to all patients. While many patients have unusual, irregularly bordered birthmarks, known as cafe-au-lait spots, this skin condition is mostly harmless and doesn't require special medical attention. What does need attention are the varying symptoms that come with the other, more serious disorders that make up the triad: polyostotic fibrous dysplasia and precocious puberty.
Despite their complex-sounding names, these conditions aren't difficult to spot or understand. Put simply, polyostotic fibrous dysplasia means that your child's bones may break easily because some of his bone tissue is replaced with soft, fibrous cells. Precocious puberty means he may experience symptoms of puberty before the age of 9.
3. Prevent Short Stature and Bone Aging
It can certainly be disturbing to watch your child enter puberty before entering middle school, but the bigger concern is how this can affect her growth. Children who experience precocious puberty are at risk of short stature as adults and premature bone aging because of the increased exposure to puberty-inducing hormones.
Your doctor may suggest treating your child with aromatase inhibitors, medications that lower the amount of estrogen and testerone in the bloodstream. In addition, he may recommend your daughter take the antiestrogen drug, Tamoxifen, which not only lowers her risk of estrogen-sensitive breast cancer, but also slows the progress of precocious puberty.
4. Increase Strength to Reduce Fractures
Early puberty isn't the only threat to the bone health of children with McCune-Albright. With fibrous tissue replacing vital bone, there's an increased risk of fractures in your child's legs, arms and skull. Though there's no treatment to reverse the condition, working with a physical therapist to increase his muscle strength can be helpful in preventing fractures of his weight-bearing limbs.
