Many newborn babies are jaundiced (hyperbilirubinemia) and have blue light phototherapy for a few days to reduce potentially dangerous blood bilirubin levels until their livers are fully functional. People with Crigler Najjar Syndrome (CNS) have genetic defects that involve permanent hyperbilirubinemia requiring ongoing, intense blue light phototherapy. For people with the most severe forms of CNS, 12 hours phototherapy each day may be required.
Most CNS people who use phototherapy do so while asleep in bed at night with lights either overhead or underneath. This phototherapy exposes only about 35% of skin surface to intense irradiation at any time and is referred to as single-sided phototherapy. While this is an adequate and appropriate arrangement for small children who sleep for about 12 hours each night, it presents major lifestyle difficulties for children and carers.
As children grow into adolescents and adults, the amount of phototherapy needed increases, but most night phototherapy becomes less effective. Sleeping time reduces to about 8 hours and, for many CNS people, 8 hours of night phototherapy cannot safely control blood bilirubin levels. Lifestyle problems increase. Night phototherapy becomes unacceptable for people who no longer wish to sleep alone. Users of night phototherapy must then contemplate having a liver transplant.
Using sound phototherapy principles we have developed and improved equipment that provides multi-sided phototherapy and which is many times more effective than overhead night phototherapy. This allows the time required for phototherapy to be sufficiently short to allow treatment during waking hours to become a valid option.
The first set of sit-up lights was built for Lauren in 1996 when she was nearly 5 years old. Compared with 6 hours per night overhead phototherapy previously, she required one hour per day while reading, eating or watching television. The one hour required was often in two 30-minute sessions. She has been sleeping normally (without night phototherapy) for ten years. Control of bilirubin levels has been good.
Since 1996 a series of progressively improved designs of the equipment has been built for Lauren and for other CNS children. The equipment is not difficult to build for a reasonable tradesman and is relatively low cost compared with commercial equipment.
Many CNS people could benefit from the use of this type of phototherapy. For adults who do not wish to sleep alone this may be the only acceptable form of phototherapy available.
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