ADVOCACY

I was reading a post on LMBBS about one of the kids being treated rudely by medical staff who had trouble getting an IV started "because she's so fat". That really upset me, as I'm sure it did for most of the people who read it.

LMBBS patient advocacy needs to continue the hard work of addressing the troublesome medical staff - something an organization that I belong to for my condition (Hereditary Angioedema Type III) is having to work diligently on. 


One of my personal physicians said that even she gets treated badly by hospital docs, especially in ER. I'm hoping LMBBS, as my organization is doing, will continue to work on educating hospital administrators about compassionate care for all patients whether we come in with a rare condition that most folks don't understand, or are patients with more common issues. 

With LMBBS the medical personnel often don't have the training to understand that obesity is a part of the syndrome, and yes, caregivers are very aware of the problem, but that is not the emergent issue when going into the ER or admission to hospital. 

Unfortunately, nutritionists have not had a good track record in assisting LMBBS patients and caregivers to deal with this aspect of the condition. Obesity is the number one issue that caregivers list as a stressor in my caregivers' survey. 


I hope we can develop a working group to deal with this issue, with the goal of educating medical professionals and nutritionists, and secondly to work toward a protocol for caregivers to help the LMBBS patients with this aspect of the condition. We need assistance in developing ways to help kids lose weight and get healthier that will become a lifestyle change that is fun and not unpleasant and difficult.