My name is Arianna Faro, and I was diagnosed with Klippel-Trenaunay syndrome at birth. I am now 33 years of age (on the cusp of turning 34) and have had a great deal of time to reflect upon my past in recent times. Before I delve into some of that, I would like to first and foremost thank Lex for the wonderful opportunity to write for such an amazing community that aims to garner awareness of the disease along with helping patients and their families with a multitude of resources. It is such an immense honor and privilege to be able to submit and to contribute some of my writings to the CMTC-OVM non-profit organization.
I myself have been greatly impacted by KTS due to all of the numerous obstacles it’s presented me with throughout the entirety of my life thus far.
However, it is worth noting that I was not the only member of my family whose life was greatly altered due to me being born with such a rare, progressive disease that often causes me to have frequent hospitalizations and surgical interventions.
My Mom was months pregnant when she found out her soon to be born 2nd born child was going to be have some kind of vascular anomaly; during a routine pregnancy ultrasound, doctors spotted what they believed at the time to be a rather large hermangioma present upon my left lower extremity. Mom and Dad were filled with extreme anxiety and panic, as they were unsure of what to expect as to how I was going to be born.
My dad says that upon the day of my birth, there were over 10 medical professionals present in the room where I first made my entrance into the world. The doctors had been scared I may bleed to death upon birth, so there were a slew of them gathered in preparation for the worst possible case scenario.
I can’t even begin to fathom how scared my parents must have been at that time; Mom’s first pregnancy was both smooth and unproblematic, and to be thrust into such an unpredictable and anxiety-ridden situation is inconceivable to me.
Luckily, my birth went relatively smoothly as there was not as much bleeding as initially anticipated. However, I still had to be thrust away at birth and taken to NICU at a different (conjoining) hospital. Upon my birth, a leading world renowned KTS specialist came to my Mom’s bedside and told my parents I had Klippel-Trenaunay Syndrome. The doctor told my Mom and Dad that I may never walk, and explained other possible probabilities they could expect associated with me having this disease. After some time in the NICU, I was able to be sent home.
My birth was just the beginning of the momentous trials and tribulations we would face as a family due to me being born with KTS.
In my eyes, Mom and Dad are undoubtedly the most strong people I know to have endured as much trauma as they have in regards to my disease throughout the years. They have always made sure I have had access to the best specialists in the world to help treat my disease. I am so beyond grateful for all in which they’ve done (and continue) to do for me
I look forward to writing more in regards to both my (and some of my parents) past and present with this disease, and I want to thank all who have taken the time to read a bit about my journey thus far with Klippel-Trenaunay syndrome. And, again, I would like to thank Lex for the opportunity to be able to share about some of what I’ve been through as a patient.
I look forward to sharing more about my journey with you guys each month in the new year.
May you be happy, healthy, and safe.
