You, your family, and your friends
Each parent whose child receives a diagnosis of Marfan syndrome or a related disorder reacts differently. Some may feel relief that they finally have answers, some may question if they did something to cause the condition, some may just be afraid. Reactions may also vary if a child inherited the condition from apparent or if the family to have the disorder.
Many parents do not find out they have Marfan syndrome until after their child is diagnosed. Coping with both the diagnosis for you and your child can be challenging. Your symptoms and your child’s may be completely different since the gene mutation affects each individual in a variety of ways. Even within a family, one person may have more severe features of Marfan syndrome than another.
You can get support to cope with their own reactions to learning that their child has Marfan syndrome. Often a professional, such as a genetic counselor, a social worker, a psychologist, or a member of the clergy (with knowledge of genetic disorders), can help parents with their feelings about the diagnosis. The Marfan Foundation offers a parent phone support group and an online parent support group on our website; CONNECT. Support groups can be extremely because they provide parents with an opportunity to connect with other parents who are going through a similar situation.
Your child’s brothers and sisters who do not have the diagnosis also need support. They may feel guilty that they do not have Marfan syndrome or fearful that they might still get it. They might be fearful of what could happen to their sibling. Sometimes, jealousy of their affected sibling may occur because they see their sibling getting special treatment and attention from their parents.
Parents need to openly address any questions siblings may have about themselves or other family members. If the diagnosis is overwhelming for the siblings, there are support programs for them. The Marfan Foundation offers a telephone support group for unaffected family and friends.
Extended Family and Friends
Your extended family and friends need to be educated about Marfan syndrome. Often, relatives and friends want to help, but don’t know how or what to say. Educating your extended family and friends helps them better understand the diagnosis and can make them feel more comfortable. It is also important to be as specific as possible when addressing your wants and needs for yourself or your child. Let them know what your child can and cannot do so they can interact with your child appropriately.