Running For Research - PWSCaregivers of people with Prader-Willi Syndrome often experience compassion fatigue. Caregiver stress is often at its highest when the person with PWS is between 12 and 30 years old and often exceeds that of caregivers for traumatic brain injury and Alzheimer disease. The ‘burden’ of disease is of great interest to the FDA as they review potential treatments for PWS.
Understanding the potential negative impact of caregiving for a special needs child is important because the burden and lack of wellbeing that caregivers experience can reach clinical levels for the caregiver and directly impacts the quality of care and the outcome for their vulnerable children with PWS. Previous studies of PWS caregivers have indirectly assessed the burden of caregiving via examining parent/caregiver psychological distress, coping, and family/interpersonal relationships. When compared to families of children with a variety of causes of intellectual disability or complex health conditions, parents of children with PWS report higher levels of stress and mood disruption, more difficulties coping with their child’s symptoms, higher levels of family conflict as well as lower quality of life. Taken together these studies suggest that PWS may impact parent caregiver mood, stress levels, and family relationships, to a greater degree than is seen in caregivers of children with other conditions.
High Levels of Caregiver Burden in Prader-Willi Syndrome ( March 2018)
These findings of high caregiver burden are particularly important to consider when the FDA is evaluating any New Drug Application ( NDA) for use in the PWS population. As part of the drug approval process, the FDA considers a structured Benefit-Risk Assessment to weigh the possible benefits of a drug compared to the risks (eg, possible side effects). It is therefore necessary to document the patient and caregiver`s perspective on the need for treatments to improve PWS symptoms, and the level of risk that families are willing to accept (eg, what risk of side effects would be acceptable for a drug that is effective).
As Clementine’s mom, I know very well the stresses caused by caring for someone with PWS. This stress is shared by my husband and also my other children. Our family operates under different rules than most non-PWS families. Although Clementine has yet to reach full hyperphagia, she will still food seek when the opportunity presents itself. So, to maintain her safety, Clem must be kept under constant supervision. The greatest burden I feel as her caregiver is to always be alert and on guard, 24 hours a day, 7 days a week. I’m sure it’s difficult for someone not in this situation to imagine. I can’t go for even a minute without making sure all food is secure and I know where Clem is and what she is doing. Having to be in a constant state of heightened awareness is fatiguing, both mentally and physically.
Clementine is a very mild mannered child. She has no behavior problems YET. I think that her lack of behavior issues may be because she has yet to experience full fledged hyperphagia. My fear of how this may change when she does become hyperphagic is tremendous. What will happen to her? Will she become a different person? Will she become hostile or violent? How will our family structure cope if she does? How will it affect me, my husband and my other children? Am I strong enough to cope? What does the future hold for all of us? Will there be a time when I’m too old to care for her? Where will she go if I can’t care for her? The list of concerns, fears and worries is too long to list here. Suffice it to say that I try not to dwell on these issues because to do so could paralyze me and ruin my current mental and physical health. And that would impact my ability to care not only for Clem but for the rest of my family.
These fears and concerns for the future are what drives me to fundraise for PWS research. First and foremost, I desperately want Clem to live a happy life, not a life filled with physical and mental challenges. But I also have a strong drive to want to preserve my own life and happiness and the lives and happiness of my husband and other children. We are all tied together by Clem’s PWS and we will all swim or sink, to varying degrees, based on her ability to cope and the level of care she requires as she ages. If new treatments and medications are discovered to help manage her symptoms and challenges, we will succeed and thrive. If there are no new developments and no new treatment opportunities, we are destined to struggle and face increasing hardships.
Please consider making a donation to our fundraising event, Running for Research Prader- Willi Syndrome. Your support can make a huge difference in our lives and the lives of all of the PWS families facing the same daunting circumstances.
