Building Your Support Team
Each person affected by Gorlin syndrome deals with his/her cancer in a personal and individualized manner. Generally, a young person affected by Gorlin syndrome needs strong support from family, siblings and friends. After all, the initial diagnosis and early realities can be overwhelming for a young boy or girl. If, for instance, a middle school young person develops oral cysts and/or skin lesions, family support is critical. Teenage years are hard enough. The stress of repeated medical treatments and recovery periods can easily wear on the psyche of a young person already trying to manage the emotions of puberty and hormones.
An adult who has been dealing with his/her Gorlin Syndrome for many years may handle surgery and recovery very differently. He/she may not need or want a family member or friend accompanying him/her on a long Mohs surgery day, for example. He/she knows the drill and pushes through it. He/she may feel that to be accompanied by a family member or friend is to focus too much attention on an already consuming reality.
Every affected person faces times of discouragement, and so most maintain connections with others who know Gorlin syndrome intimately. After all, approximately 1 in 27,000 has Gorlin syndrome and those kinds of odds can leave one feeling alone in his/her battle against a rare cancer. Unless one affected by Gorlin syndrome attends a Gorlin syndrome gathering or has otherwise developed friendships with those affected, he/she may never meet another person with Gorlin syndrome during his/her entire lifetime! As with other rare diseases, most who have Gorlin syndrome value a support system of others who know first-hand their shared experience and lifestyle.
As with any relationship, it is important for both the person who has Gorlin syndrome and his/her support team (family, friends, etc.) to communicate well. It’s important for those with Gorlin syndrome to express their gratitude for the support. At the same time, they need to let their support team know what kind of support they need. Hopefully, they can count on as much or as little support from family and friends as they need at different points along their journey. Sometimes active support is needed. Other times, support can be a constant reminder of one’s cancer and can make it feel like Gorlin syndrome is the main topic of conversation too often. It’s a matter of continually finding a healthy balance of support and space. And, it is a very individual matter requiring ongoing two-way communication.