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Nephrol Dial Transplant (2001) 16: 1-4
© 2001 European Renal Association-European Dialysis and Transplant Association

Editorial Comments

How well do we manage and support patients and families with dominantly inherited renal disease?

Micheline Levy

Unité 535 Inserm, Génétique épidémiologique et structure des populations humaines. Bâtiment Inserm Gregory Pincus, Le Kremlin Bicêtre, France

Introduction

Diagnosis of an inherited disease in an individual affects every member of the family. Consequently, the disease should be viewed as a family issue, not an individual one. However, the care of a person with chronic renal disease places a heavy demand on an overburdened health care system ill equipped to address secondary issues involving unaffected family members. Personal experience with support issues was explored during interviews with patients presenting with Alport syndrome (AS) [1], von Hippel–Lindau (VHL) disease [2], and autosomal dominant polycystic kidney disease (ADPKD) (Levy, unpublished data), and within a patient organization for genetic renal diseases.

The interviews revealed that most patients carry a substantial burden of stress, related not only to the chronic renal disease itself, but also to the fear of discrimination based on genetic risk (health care, insurance, employment), difficulties in their intimate relationships (marital conflict, separation, or familial breakup), . . . [Full Text of this Article]

The shock of the announcement

Distressing presymptomatic genetic testing

The particular case of presymptomatic ultrasonography in ADPKD

The anxious uncertainty of children's health status

Particular difficulties with at-risk adolescents

Distress about future children

Conclusion

Acknowledgments

Notes

References


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