Running For Research - PWSBehavior and mental health issues such as depression, bipolar disorder and psychosis impact many individuals with PWS. PWS is considered a ‘high risk’ population for mental illness with the rates of occurrence of delusions and psychosis higher than compared to the general population, especially for those with UPD.
Clementine has UPD ( Uniparental Disomy) PWS. This puts her at an even greater risk for significant mental illness within a group that is already much more susceptible than the typical population. We are talking about mental illness that causes psychotic breaks, hospitalizations, visual and audio hallucinations…well you get the idea. To complicate matters, when these issues do arise, there are 2 factors that serve to potentially make the situation even worse (although its hard to believe this would be possible).
The first factor is a dire lack of psychiatric services available for people suffering from both PWS and a mental health condition. I’m sure you are aware of the deplorable state of mental health resources in this country. All you have to do is watch the news for a minute or 2 and you will see a story of some terrible tragedy that has unfolded because someone was suffering from a mental illness that has gone untreated. It is gut wrenching and heartbreaking. Every time I see one of these awful incidences on the news, I put Clementine in place of the person involved and myself in place of the grieving parent. It’s nauseating and terrifying and fully represents my greatest fear for Clementine and for our family.
The lack of resources takes shape in several ways. There are very few psychiatrists, psychologists or therapists that have any real knowledge or expertise in both PWS and mental illness. People with PWS have an extreme sensitivity to most medications and can suffer extreme side effects from being prescribed something that doesn’t quite “fit”. We have already experienced this with Clementine in our efforts to help her with her constant anxiety. Sometimes the side effects can have greater detrimental consequences than the original problem. In addition, there are almost NO residential facilities for people suffering from both PWS and mental health problems. If you place a PWS person in a typical mental health facility ( of which there are few to begin with), then you have a food security issue that can prove deadly.
The second real problem with PWS and mental health issues is the lack of research being done in this area. The current landscape is pretty barren. The medications that are helpful in the typical population often have no real positive effects in our loved ones. We are in desperate need of new solutions and treatments.
Mental health issues, as they relate to Clementine in particular, have already shown their presence. She suffers from a constant anxiety that is present regardless of her state of mind. This anxiety shows itself in her behavior and in her speech. Clem is always worried that something unplanned will arise and change her schedule. Or she is preoccupied with the passing of time. Or she is perseverating on a particular subject (which pops up completely without context and is difficult for the average person to comprehend). Sometimes I watch her without her knowledge, when she is in her room (her ultimate happy place) using her iPad (her favorite activity) and you can see her body humming with anxiety. It is visible on her face and her body is electric with the tension. It makes me so sad for her.
We have tried MANY medications to help with this anxiety. Some have worked a little and some have not worked at all. Some have even backfired and have had unintended results that then had to be dealt with and resolved. No easy feat that!
The bottom line is this. Mental health issues are my biggest concern for Clementine’s overall health and happiness. I can deal with any of the physical problems arising from PWS, even the hyperphagia, but the mental health potential terrifies me beyond all other things. It keeps me awake at night. It makes me wonder what will happen to Clem when Stephan and I are gone if Clem is struggling mentally. How will my other children handle it? The list of concerns is quite long.
This is yet another reason why we fundraise for PWS research. There must be progress in the number of effective psych medications available for our population. There must be an increase in the knowledge of the consequences of having both PWS and mental health issues and how to deal with them in the same person at the same time. Clementine’s happiness and quality of life is at stake. Please help us in our mission. Thank you for reading!
