WILMINGTON, MA — Below is a guest blog post from Wilmington’s Arianna Faro:
This past February, I had the chance of a lifetime when Discovery Channel decided to film me for one of their documentaries!
The documentary, for a show called Body Bizarre, focuses on patients born with extremely rare chronic illnesses that causes their anatomy to be very atypical.
Just why were they filming me, then?
I was born with what ABC News has named one of the 12 “most baffling medical conditions” – I have Klippel-Trenaunay Syndrome. Chances are you have never heard of KTS before, and you are hardly alone. The vast majority of doctors are unaware of its existence, too.
What is KTS? The simple answer is a chronic, progressive and incurable chronic vascular disorder. To get a little but more extensive, though, it can be characterized by a triad of symptoms, including: abnormal veins, overgrowth or soft tissues and bones, and a capillary malformation (also known as a port-wine stein). It tends to fall in between medical specialities, such as lymphatic, vascular, and orthopedic. While it typically impacts a limb on the lower body, this is not always the case and it may target other areas, too. Various treatments can help in managing the symptoms the condition presents, however it is still quite often progressive. it is worth noting that the cause of the condition is unknown and that patients are always born with it.
For me, personally, KTS has impacted almost the entirety of my life thus far. To read more about that, you can click on another article I did here (https://wilmingtonapple.com/2016/02/28/guest-blogger-wilmingtons-arianna-faro-discusses-living-with-rare-disease/).
Since I was born, I was ushered in and out of the hospital for various treatments, being extremely ill, surgeries, etc. At 2 months old, I had my first run-in with septic shock. If I did not have the incredible Vascular Anomaly team members at Children’s Hospital, I would more than likely not have the liberty of typing this at current. As I have gotten older, I have learned not to take my incredibly fortunate circumstances for granted.
Not everyone has access to doctors in Boston the way in which I do. Not everyone has such supportive family and friends.
And for that reason, despite being in a less than pleasant space mentally, physically, and emotionally speaking, I said yes to filming with some encouragement from my Aunt Debbie. I am so glad I did, because during the entirety of the process I learned a lot about myself.
I hope that people who come across my story recognize that it is not an illness or set of unfortunate life circumstances that defines them – rather, it is the way in which we deal with these things and try to overcome them that does.
To find out when my episode of Body Bizarre will be airing, feel free to follow my blog at http://www.facebook.com/Ariannasbeautifullife.
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