GUEST BLOGGER: Wilmington’s Arianna Faro Discusses Living With Rare Disease

WILMINGTON, MA — Below is a guest blog post from Wilmington’s Arianna Faro in recognition of Rare Disease Day.

Hello there, everyone! My name is Arianna Faro, and I have been fortunate enough to call myself a resident of this exquisite town for just over 23 years. After having moved here on the cusp of turning 2, I have experienced an array of beautiful memories here with family and friends, and I know there are many more to come!

Despite all of the wonderful times, though, there has been a tremendous amount of hardship as well. That is because I was born with one of the rarest congenital disorders known to man, called Klippel Trenaunay Syndrome. Haven’t heard of it? You are hardly alone. The vast majority of doctors are not even aware of its existence, and the ones that are (even those who specialize it) are often at a lost for how to treat it! In 2009, ABC News named KTS of the “most baffling medical conditions,” along with 11 others topping the list.

So, what exactly is KTS? This is a hard question for me to answer, as symptoms can vary dramatically from patient to patient. In general, though, it is a chronic vascular disorder characterized by a triad of symptoms, including: abnormal veins, overgrowth of soft tissues and bones, as well as a capillary malformation (also known as a port-wine stain). Often a time, it falls in between medical specialties, including (but not limited to) vascular, orthopedic, and lymphatic. It typically impacts a limb on the lower body, although this is not always the case and it can target other areas as well. Unfortunately, there is no cure for KTS and despite treatments that can help manage symptoms, the condition is often progressive. The cause of the condition remains unknown and patients are always born with it.

I realize that I probably have you feeling extremely confused as to what this condition is and the way in which it affects patients, so I want to attempt to humanize this condition by telling you the way in which it has impacted me throughout the years.

I can never recall a time in which I was not sick or in a momentous amount of pain… Having been born into this lifestyle, I was always privy to experiencing intense bouts of sickness, relentless pain, constant hospitalization, and frequent surgeries (along with tiresome recoveries). Despite these unrelenting obstacles, though, I had the best childhood in which a girl could have ever asked for! As I have grown older and my condition has progressed to a more severe state, adulthood has proven to be much more difficult. Still, I am always looking to learn and challenge myself so that I can live life to the absolute fullest.

I think the biggest misconception people have about my illness is that it impacts merely my left leg, foot, buttock, genitalia, and lower back. My left leg and buttock are 3 times the size of my right, and I frequently endure blood clots and immense bleeding, along with severe swelling and inflammation. In reality, though, Klippel also wreaks havoc on my immune system as well. I often experience gruesome bouts of cellulitis and sepsis, which has caused me to endure temperatures of almost 106 degrees Fahrenheit. In fact, I have almost died from this condition several times over the course of my lifetime thus far. I know I have had about 115 hospitalizations, but my parents and I don’t really bother keeping track anymore (we try to turn our attention more to the positive).

A great deal of people ask me “how I do it.” The truth is that I don’t do any of this alone. I attribute my success in living with this condition to the people in which I have chosen to surround myself with; they play a huge role in helping to keep me centered! I see a talk therapist quite frequently as I struggle with clinical depression and obsessive compulsive disorder. I also have phenomenal parents who cater to me physically and emotionally, but also encourage me to work hard and pursue my dreams no matter what. My doctors at Children’s Hospital Boston are so skilled and without them I would not have the privilege of typing this right now. Last, but certainly not least, I have friends/family and a slew of vascular anomaly/Klippel colleagues who breathe life into me day-in day-out. I really am not doing any of this alone, and for that I am very much so grateful… I have also met so many wonderful and understanding people throughout the Wilmington community! I feel so blessed and proud to call myself a resident of this town.

Because Klippel Trenaunay syndrome is so uncommon and unknown by most, I feel it’s imperative to speak up for it as much as I can in order to garner awareness. Despite all in which my condition has put me through, I refuse to be defined by it. Sure, my anomalies are a part of me, but they hardly equate to me as a whole! When people think of me, I want them to think of me as a person who is uplifting, and hopefully I can inspire others to be confident in their own skin no matter how different they may look or feel. I want to advocate that people should never defined by their obstacles that plague them, but rather how hard in which they work to overcome them.

At current, I am about to undergo 2 more surgeries within the next month due to new issues I am having with this condition. Despite all of the pain and hard times, though, I am so utterly grateful to be alive! I am working on getting my bachelors in psychology at Merrimack College, and feel so privileged whenever I get to be in the classroom. School (and academia in general) has always been an amazing outlet for me to feel “normal,” and to focus on something aside from my Klippel. I’m also extremely passionate in regards to writing, and feel so blessed to be able to share my story with others. In 2012, I had the pleasure of being the featured speaker at the national Klippel Trenaunay Syndrome conference. During that time, I met so many phenomenal people, and feel so blessed that I was able to participate in such a life-changing event. I hope to continue to garner awareness for this very rare medical issue in the future, rather that be through writing or motivational speaking.

Thank you so much for taking the time to read this. I hope I was able to teach you a little bit about this very rare and mostly unknown medical condition for this year’s Rare Disease Day of 2016!

– Arianna

Learn more about Arianna, and ask her questions, on her Facebook page — One Limp At A Time.

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