Editor's note: Ms. Wendekier, a school nurse herself, wrote this paper for a degree program. There are a number of VHL families in her local area. The amount of time that the school nurse is able to devote to these activities varies greatly from one community to another, but parents should look to the school nurse as a possible resource.

The school nurse has an essential impact in helping students with VHL by tending to the medical needs of the student, educating the student and their families, and acting as the liaison for the student to the school system and the community.

Since VHL is not being diagnosed until adolescence in the local community, interventions in the educational arena will be limited to the high school student body.

The school nurse must first meet with the student and the parents to determine the level of involvement they would like the nurse to have in the student’s care, and the level of privacy they wish to maintain. Disclosure of the student’s medical status to teachers or other members of the school is not appropriate without the agreement of the student and the parents.

The school nurse can assess for any clinical symptoms of disease progression. This will include tracking complaints of headaches, muscular weakness, gait disturbances, back pain, visual disturbances, profuse sweating, etc. This can be achieved through student interviews, teacher interviews (if appropriate), and monitoring office logs. Because of the tension resulting from academic achievement and organized sports, it is imperative to routinely screen blood pressure and monitor the student after challenging events to assess for the presence of pheochromocytomas. Should recurrent symptoms of VHL persist at school, the nurse will advise the family to follow up with their doctor.

The school nurse also acts as the liaison for the student to the school system when environmental changes are necessary to accommodate physical disabilities. Whether it is rearranging seating in the classrooms, installing adaptive equipment, or acquiring a learning support aide, the nurse fosters a smooth transition for the child’s adaptation to his or her disabilities. If necessary, the nurse initiates an Individualized Educational Plan (IEP) meeting to accommodate these needs.

In addition to managing the medical needs of students with VHL, the school nurse can assist to neutralize any potential psychosocial quandaries. Erickson described the primary task of adolescents as the formation of an identity and overcoming a state of role confusion (Ormrod, 1998). A diagnosis of a chronic condition such as VHL can impede the process necessary for proper identity formation in the following ways.

First, students at this age are very sensitive to body image. Any resultant disabilities or the diagnosis itself can foster a negative self-concept (Kaluger & Kaluger, 1984). Also, if not properly informed on VHL, the teachers may form negative attitudes toward the student. Not only would this be a source of tribulation in school, but may induce negative judgments of peers toward the student (Wallace, Patrick, & Parcel, 1992).

Second, teen years provide the opportunity to prepare for a productive role in society. The possible disabilities resulting from VHL may intimidate these children when preparing for future careers.

Third, in the state of role confusion, adolescents develop an emotional independence from their parents and the presence of a chronic disease can impede this process (Broadwell Jackson & Saunders, 1993). Fourth, teenagers are developing physical and emotional control of their sexuality (Kaluger & Kaluger, 1984). A genetically transmitted condition can have a negative influence on the child’s sexual identity and foster unfounded fears for these teens.

Because students learn more effectively in a supportive classroom, the school nurse may be called upon to help the teachers form constructive and supportive attitudes toward VHL. (Ormrod, 1998). For example, if a student were exhibiting inappropriate behavior in the classroom, the nurse might intervent to encourage the student to vent fears and frustrations. If this failed, and if the parents agreed, the nurse might share with the teacher some insights into the issues the student is coping with, in an effort to facilitate confident and constructive interactions between the teachers and the affected student.

Care must be taken to assess the teacher’s own prejudices toward medical situations, to ensure that the teacher not lower expectations of the student, or not encourage a talented student to pursue a career in law or medicine. It is imperative to promote the student to establish and strive toward appropriate goals. It is also important to note that a diagnosis of VHL does not necessarily imply that this person will ever have physical deficits. The school nurse can assist the student in making informed decisions when preparing for his or her future.

The school nurse will also assist the student and family cope with the ramifications of VHL through education and community referrals. When possible, the nurse will assist the student and family to find authoritative information about VHL and supplement this education by providing handouts such as materials from the VHL Family Alliance. The school nurse will also encourage both the student and family to work with their doctor. This will help to ensure that the student receives appropriate treatment to ward off disabilities. Referrals to agencies such as the VHL Family Alliance will provide the accurate information and support needed for these families.

Armed with the necessary knowledge, the student and family know their risks and can take actions to minimize the impacts on the life of the student. This proactive tactic can prevent the secondary disabilities that may result from untreated VHL.

If necessary, the school nurse will initiate a referral to the school psychologist. This will help the student in two ways. First, the school psychologist will promote the emotional development necessary to discern the student’s identity from the family. Second, it will allow the student to vent fears and frustrations produced from this genetic disease. This counseling can positively influence the student’s personal, sexual, and social identity. Consequently, the student will develop healthy coping mechanisms and will be less likely to engage in risk-taking behaviors.

The diagnosis of VHL permanently changes the lives of the affected individual and their family. These families need to convert their fears and apprehensions into positive coping mechanisms. The school nurse can facilitate this through apporopriate aducation and referrals. By managing the physical and emotional needs of affected students, the school will be viewed as a supportive, warm, and inspiring environment. Consequently, students affected by VHL will experience increased academic success that will enhance their future contributions to society.

As printed in the VHL Family Forum 8:2, June 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.