The Christianville Spirit: I AM PTLS

The Christianville Spirit

The Spirit that Fills Your Heart & Lifts You Up

April 10, 2013-TCS # 346

So, Last Week, I came up with an Idea about what to write about for This Week’s Newsletter. So, I think we should start out with this question, What does it mean to say that Someone, Wether it is someone in Your Family, Someone that You are close to, or Yourself, “Has PTLS.” I Mean, it’s starting to sound weird to me to say or ask things, “Do They Have PTLS?”; “I have a Friend named Danielle, that HAS PTLS”; “I, Myself HAVE PTLS.” To Me, though, saying those phrases are things I say Everyday, so I’m used to uttering that. But, My train of thought has recently gone to, “But, to say someone HAS something, means that they have a disease like Cancer or Heart Problems.” The Problem is that the word “Has” or “Have” can’t be avoided because You say it like,“I HAVE Brown Hair”, “I HAVE Tan, Hispanic-Puerto Rican Skin”, or Personally, “I HAVE Really Good Friends.” But, What about in discussing Potocki-Lupski Syndrome (PTLS)? Is It an insult to say someone HAS PTLS? Well, Okay it’s not an insult. I can tell you that people can be uncomfortable about Special Needs, depending on who you ask, but not really the point. You See, In all My Years of talking with People about PTLS, The sad part is that many call it a Disease, like there is a cure for it and that I might Die from It. It is NOT A Disease. It’s actually a Chromosome Duplication, A Rare Disorder, and In My Eyes, A Uniqueness. But, One thing we can not have is to say that PTLS is a Disease because then, People believe that they will contract it from standing near you like The Flu (Believe Me, People act weird around those who have diseases). So, then, The Question becomes, “So What is another way of saying that You or Someone You Know HAS PTLS?”. Maybe we should say something like, “We have something that makes us Unique” or something like “We are Unique in a very special way and It’s called Potocki-Lupski Syndrome(PTLS)” then, you would more likely get people more excited to ask about what Potocki-Lupski Syndrome is. Of Course, The easiest way to answer that is to say that it is similar to Autism with Autism-LIKE Behaviors, only we are really friendly and love to hug people, but it does come with some Health Problems. It is everywhere in our body and it makes us, who we are. All in all, PTLS is not something that defines you, but something that is inside of you. I AM PTLS!!

Thanks for Reading The Christianville Spirit. Accept People for who they are, Not what You want them to Be.