WILMINGTON, MA — Below is a guest blog post from Wilmington’s Arianna Faro in recognition of Rare Disease Day.
My leg was bright red and it felt as though a million steak knives were being jabbed into it. My head felt as though someone was drilling into it with a chainsaw. A slew of medical professionals simultaneously surrounded and scurried around me in preparation to transfer me from the ER to the ICU. As I lay there, my temperature on the verge of 105 and my blood pressure out of control, I could not help but wonder if I would even get the chance to say goodbye to my very own parents (my best friends). Tears began to fall down my lethargic face as I realized that fate may fall short this time.
Whenever sick (since birth), my parents have always been by my side. However, this time they were currently away on a trip to Quebec City. I could feel my body trying to shut down on me (I was in septic shock), but I wouldn’t give in. I just couldn’t. I had to at least be able to say goodbye to my parents. Nothing else mattered to me at that point. I had come to terms with the fact that my life may end very shortly, but I couldn’t go in peace unless I could say goodbye to them.
As soon as they got the call that I was in the ER, they vacated Quebec City for Boston instantaneously. They arrived at the hospital the next day. We were reunited in the ICU and I knew that if it were my time to go, I at least had my last chance to see my parents.
Something rather miraculous happened, though, and several dosages of IV antibiotics and a blood transfusion later, I survived.
Infections of these sort are not uncommon for me as I was born with a congenital vascular condition called Klippel-Trenaunay Syndrome. My life with Klippel-Trenaunay Syndrome has indeed been rather atypical whilst also incredibly formative… I’ve endured over 130 hospitalizations since the time I was born. About 1/3 of those have been gruesome surgeries done in emergent cases and/or to slow down the progression of the disease.
So, what exactly is KTS? Unfortunately, there is no easy answer to this question as symptoms can fluctuate
between patients a great deal. In general, though, it is a chronic vascular disorder characterized by a triad of symptoms, including: a capillary malformation (also known as a port-wine stain), overgrowth of soft tissues and bones, as well as abnormal veins.
Many a time, it tends to fall in between medical specialties, including (but not limited to) lymphatic, orthopedic, and vascular. Typically, it impacts a limb on the lower body. However, this is not always the case and it can target other areas as well. At present, there is no cure for KTS and despite treatments that can help manage symptoms, the condition is often progressive. It is important to note that patients are always born with KTS and the cause of the condition remains unknown.
At current, I am about to undergo a major surgery this upcoming June due to issues in which I’m having with KTS. Despite all of the pain and hard times, though, I am am looking forward to the future! I am currently on a medical leave, but am in the midst of working on getting my bachelors degree in psychology at Merrimack College. Being the in the classroom has always been a privilege for me; it helps me to feel normal and focus on something besides my Klippel. Aside from academia, I am also extremely passionate in regards to writing. I feel so utterly blessed to be able to share my story with others through my passion.
In 2012, I had the immense pleasure of being the featured speaker at the national KTS conference. This coming July, a mere month after my next surgery, I will be speaking on the panel at the next national KTS conference in Minnesota. It is my hope that I will continue to garner awareness for this rare and cruel condition in this future, rather that be through writing or motivational speaking. I have always felt it is not the obstacle that defines a person, but the way in which they try to overcome it.
Thank you so much for having taken the time to read this. For this year’s Rare Disease Day, I hope I was able to educate you a little bit about this very rare and rather unknown medical condition.
If you have any questions or wish to follow my journey further, please find me on Facebook HERE.
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