"Prelude to 'Calling You Out'"

“Prelude to ‘Calling You Out’” On the interweb, the post below this one has received a great deal of attention. Not nearly enough to consider it viral, but I recieved a great deal of feedback from Klippel patients and their families. A vast majority of those who provided written feedback admitted that the post resonated with them deeply, some too deeply, for that matter. Some of these came from patients, others from family members of patients, or simply people who realize the lack of adequate mental care in these situations. 

“Calling You Out” was indeed directed at Children’s Hospital Boston, but I knew that CHB wasn’t the only ones lacking in this area. If Children’s was lacking it, then surely other institutions were, too. This knowledge was then compounded by comments I received from various users citing the same thing at their own hospitals, including patients of the famed Mayo Clinic. The post in which I am writing now is perhaps one I should have written prior to “CYO,” but for some reason I just jumped right into my headline. Well, here is a solid example of why I feel as though the Vascular Anomalies Clinic at Children’s NEEDS an informed team of psych. experts on board, people who are educated on KTS and understand the mental ramifications it can bring about. 

“Klip….Klippel-Trenaunay Syndrome? Am I saying it right?” 

“Yes.” 

“Can you spell that for me?” 

This is generally how most of my introductory sessions with psychologists/psychiatrists have gone throughout the past four years. They would then, quite often, proceed like this...

“Wow, how bizarre, I have never heard of such a condition even with all of my years spent working in the hospital environment. Can you explain to me what it is and how it impacts you?”

At the age of 22, I can quite gracefully recite the gist of this often vile condition and how it impacts me physically, but it’s still not easy. And, after I am done, I often receive an answer along the lines of “wow…that’s complex” along with a look of utter confusion. 

Most of my sessions would then include the Dr. saying something along the lines of...

“I am not sure as though I can help you… I have never treated someone with such an isolating, rare condition before. I wish I had a group of people like you, as I would get you all together and speak. I think that would be very helpful.”

I then explain that I am in contact with various sufferers and their families, and they acknowledge how great that is. Still, many are unaware of how to treat a patient with such an intense, spontaneous condition that presents itself in so little of the population and are UNCOMFORTABLE doing so. That is why I feel the need to lobby for change in regards to this topic. Whose with me? - A