Running For Research - PWSExcessive daytime sleepiness ( EDS), also called hypersomnia, affects many individuals with PWS. According to the Global PWS Registry, approximately 46% of respondents experience this condition. There are other sleep disorders that frequently occur in our population as well.They are issues like early waking ( 31%), lack of REM sleep ( 9%), Cataplexy ( 9%) and Narcalepsy ( 5% ). However there is very little research into these conditions. Most of the knowledge the scientific community has about sleep issues and its impact on those experiencing them is anecdotal.
EDS and other sleep related issues can have wide ranging and significant consequences. These consequences are experienced across all populations, typical and otherwise. Sleep disorders are associated with conditions like heart disease, stroke, diabetes, cognition difficulties and poor social skills.
What impact does EDS have on PWS specifically? The answer is not known. What is known is that the occurrence of EDS within PWS is quite high. Is there a link between EDS and hunger? It is well established that in the typical population, fatigue increases hunger and often leads to poor dietary choices and weight gain. Could that also be the case in our community? Is there also a link between behavioral issues and EDS? It seems likely.
Clementine experiences a few of these sleep issues. The first and most prominent is EDS. We are very rigid in maintaining Clem’s sleep routine. Her bedtime is 9pm sharp. When school is in session, she wakes at 6am. Despite having 9 hours of sleep a night, Clem will begin to fall asleep on the way to school and will remain sleepy most of the morning. You can imagine how this might pose a problem for her during her school day. We have it written into her school educational plan that she be allowed to nap for at least 30 minutes each morning. And she usually does!
Clementine has tried several medications that are designed to assist with EDS. So far, all of them have proved marginal in their success, even at dosages that would be effective for an adult. I believe that EDS is hindering her educational progress , at least to some degree. We all know how hard it is to focus and to learn when you are fatigued!
Clementine also experiences early waking. Her waking time is always around 6 am, even in the rare instances that she goes to bed later than normal. Her early waking has improved somewhat as she has gotten older. When she was a toddler and through pre- school age, she would wake as early as 4:30am. That was tough on her but also disrupted the sleep of everyone else in the house!
Because of a lack of research and data collection, the questions surrounding PWS and sleep disturbances are largely unanswered. If we can’t define the problem and the frequency of occurrence, how can we draw causation conclusions? Without evidence based conclusions, there will be no real movement toward solutions and treatments to address the issue of EDS and the other sleep conditions.
This is where RFR would like to step in. Dr. Jennifer Miller at the University of Florida is proposing a study of sleep disorders in PWS persons. The goal is to collect data about EDS/Sleep Disturbances within a wide selection of age ranges. This data, once collected, will hopefully provide a path toward effective solutions and treatments.
In order to fund this study, we need your help! We are looking for people to join our running team and raise money for our mission. We are also looking for donors. Please visit our fundraising page to make a donation to our cause. Without your help, no inroads will be made into this significant and life altering aspect of PWS.
