Arianna Faro - One Limp At A Time Klippel-Trenaunay Syndrome

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Arianna Faro - One Limp At A Time Klippel-Trenaunay Syndrome

A 30-year-old who lives with one of the rarest conditions, Klippel-Trenaunay Syndrome Hey everyone! At 18, I was hit really hard with anxiety and depression.

I'm a 23-year-old college student who was born with KTS (Klippel Trenaunay Syndrome). I am fortunate to have had support from amazing professionals and family during that time.I want those who are also struggling with chronic/mental illness to know there is indeed hope for them, which is why I am majoring in psychology at Merrimack College. ( : In terms of this page, I hope to garner awareness as to what Klippel is and the emotional toll it can have on its patients/family members. I am treated by the outstanding Vascular Anomalies team at Children's Hospital Boston. View my complete profile

07/08/2025

Hey guys ♡
I hope that you are doing well!
I managed to make it through appointments with 4 different specialists of mine throughout the latter part of July. Doctors' appointments used to be such a breeze for me, but in recent years I find myself extremely anxious prior to them, to the point where I have trouble sleeping sometimes 2 to 3 days prior. The thought of going near any medical facility causes me a deep sense of fear.
I think the reason in which going to these appointments trigger me so greatly is really a two-fold one; on one hand, I am scared that there will be some kind of bad news pertaining to my health while at them. These past couple of years I begun to live for me again, and from a mental and emotional standpoint, I have become very much so invested in being (and staying) alive. Secondly, I definitely still have issues deriving from my medical post-traumatic stress disorder. Being in and out of the hospital so frequently for 20 years has undoubtedly taken a momentous negative toll on my mental health.. I didn't realize just how badly it did until 2024, when I had a full-year reprive from being hospitalization free and had more time than ever to reflect upon my grueling past.

I should also note that I get incredibly fearful for virtual visits as well, but those are less intense in terms of overt symptoms such as shaking and sweating.

I do have some good news to share. The stocking distributor I have been working with has gifted me a free knee-high compression stocking! I am so incredibly thankful to him, as I need one now more than ever before!
Some may remember that last year, I also wrote about being gifted a couple of free (full leg-lenth) stockings in exchange for letting a company use images of my anatomy for advocacy purposes. The ones they gifted me were full-leg length ones. While I am so appreciative that they did that, the stockings ended up being a horrible fit and just not feasible for everyday life. Aside from the fact that they dug into my waist and were just way too tight,
they took far too long to get on, which was not conducive to busier days..
I am excited to finally have my hands on a knee- high one. We are still going to continue to fight and get the remaining stockings I need covered by insurance. At current, we are in the midst of doing an appeal to the insurance company.
The knee-high one came at the perfect time, however, as my thrombophlebitis has been acting up a lot and has become an indeniable source of some of my day to day chronic pain. I met with my pain management doctor (who I could not respect nor be any more grateful for) toward the end of July; given how much day to day pain medications I am already on, we agreed to leave the medicinal routine as it is right now. He told me that icing it, along with elevating and wearing a compression, would help to negate some of the pain's intensity.
The thrombophlebitis is located on my left KTS calf area, so the stocking will wrap around the area perfectly!

I am utterly exhausted at the moment, so I am going to head to bed shortly. I am sorry that this was such a boring catch-up post. I do currently have a lot of emotions swirling around inside of me, especially in regards to my upcoming operations and just where I am at with life in general right now; I am going to to try and tap into those feelings more in my next post.

Thank you guys for taking time out of your own precious lives in order to follow some of mine. It continues to mean such a great deal to me. ♡

Below are a couple of pictures from last weekend. One is with my younger sister, and the other one is with my beautiful youngest niece Madeleine ♡

Sending love,
Ari

02/08/2025

Hi guys ♡
Here is the link to my new July blog post for CMTC-OVM that was posted a couple of days back ♡ I really like how this piece of writing turned out : )

https://www.cmtc.nl/en/members/blogs/blog-arianna-faro-usa/

I am so grateful to my dear friend Lex for allowing me to share some of my journey with his readers; he is truly such a spectacular person and friend.

Global Cmtc-Ovm Organisation

Thank you Lex for all of the amazing work you do on behalf of the Klippel-Trenaunay Syndrome community and for those with vascular malformations.

- Ari

27/07/2025

Hey guys ♡ I am so sorry I went MIA for a bit after the last post.
I've had some important doctor's appointments since, and I am just trying to wrap my head around this coming Fall. I haven't had any operations done for years now, and the thought of being immersed back into a medical atmosphere is just way outside of my comfort zone.. My stomach feels like I am on a rollercoaster just typing about the topic right now. I will be having one operation at the beginning of September, and another one at the end of October.

Even though the September one is a day surgery, that one scares me most as it will be my first time having work done by this doctor. He's chief of colorectal at Brigham and Women's, so no doubt I am in the most skilled of hands..however I still can't help but to feel nervous. I developed a great deal of medical anxiety in the past couple of years, and was actually diagnosed with medical PTSD last year. I dread appointments and even stepping foot near/in a medical atmosphere. I start shaking beforehand.

I am going to try and keep myself as busy as my body will let me be this coming August. I'm planning on spending a lot of time with dear friends and family. I have an upcoming Dr.s' appointment this week, but after that I am to be free or dr.s appointments for a bit. Seeing so many of my specialists in a short period of time has had me in a very anxious state of mind.

I'm about to go take a long, hot shower to calm myself down and relax and bit ♡

Below is a picture of me and my Dad grabbing lunch the other day in between 2 of my dr.s' appointments.

Sending love,
Ari

17/07/2025

Hey guys ♡
I am on the way home from an appointment I had with the head of general/colorectal surgery at Brigham and Women's Hospital. I'm going to be having a small procedure done with him in the early Fall. I know I am in good hands with him. Will give more details and a better update once I am home and more settled.

Thank you guys for the continued love and support you always show me.♡
Xo - Ari

10/07/2025

Hi guys ♡ everything is still continuing to go well for the most. Somedays, the pain from the thrombophlebitis is relentless and, simply put, brutal. I see my pain doctor in a couple of weeks to go over everything in person. I feel really fortunate to have my pain doctor; he has managed to strike a very delicate balance of treating my pain while also not making me out of it/overmedicated the way in which I had been for a lot of my 20's prior to meeting him. He has had a huge part in me being able to be more physically active these past couple of years. For so many years, I was too tired from being sick and in too much pain to go out a lot; now I get bored and restless when I am inside my house for too long..how things have changed (and for the best).

I haven't talked much about my mental health on here in a while, but all is going ok lately. My biggest struggle is my obsessive compulsive disorder, it is something I have to contend/battle with from the moment I open my eyes to the minute I fall asleep..I find dealing with the OCD much more dreadful than that of my KTS. It is definitely more distressing, at least from my own viewpoint. I suppose we all have our own things though..those hidden battles we fight in silence that's not out there for the world to see on a day to day basis. I am just going to continue to wake up each day and put one foot in front of the other. ♡ one of my nurse NP's thinks I should look into a website called NOCD. I am going to check it out and explore what they are all about. I am hesitant to tell a new person all of my struggles from beginning to end, but if there is a chance it will help, I know it will be worth it.

♡
Ari

06/07/2025

https://www.instagram.com/ari_helena?utm_source=qr&igsh=bXBkazdrd2NieGFl

Hey guys ♡ this is my Instagram, if anyone would like to follow me on there ( : ♡ I also share some of my stories there. I know I have not been the best at updating on here lately, but I am going to change that and get back into a good posting rythym. Posting on here is so incredibly good for my soul; it is truly one of if not the most cathartic thing I can do for myself. It is medicine for my soul. Aside from getting some heavy things off my chest, it also gives me a chance to connect and cross paths with some of the loveliest souls. Thank you guys for taking time out of your own busy lives to follow along on my journey and to connect with me.

All my love,
Ari

03/07/2025

Hey guys ♡..
I hope that everyone is doing well!

Life has been pretty stable lately, which is all I ever really ask for. ♡ chronic pain and bleeding are still my biggest issues. I will be having an operation done on October 27th with my amazing interventional radiologist, which will mostly consist of co2 laser and shclerotherapy. I've been reluctant to have any more procedures done in recent years, but my daily life is undeniably hindered from all of my chronic pain. While the procedure won't cure all of it, it will certainly make day to day life more bearable, which is really all I want. I chose to have it done in the Fall so I could enjoy the summer.

Summertime is when most of my family's birthdays take place, so I traditionally love this time or year. It is always fun to get to spend even more time with one another. ♡

Below are some photos of my favorite memories/moments of summer so far.

Xo - Ari

24/06/2025

Hi guys ♡

Just doing a quick, random post before bed.

Summer is off to such a good start for me this year! For so many years of my life, summertime was when I suffered some of my worst and most severe cellulitis infections, so the season hasn't had a positive connotation to it (at least in my mind) for a multitude of years.

The past couple, however, have been so much better. Last year, I got pneumonia in July, and it took a whole month to recover from, so that wasn't fun. However, I was able to ride it out at home as opposed to a hospital, which was a blessing. There were many years I practically lived in the hospital during the summer...it was brutal. Sometimes, the hospital stays were a month long, and I was on contact precautions, so I was confined to a single hospital room for weeks on end. I look back, and I truly don't know how I managed to get by from a mental and emotional standpoint.

I've come a long way though, and I am so grateful for all of the amazing care I have recieved and continue to recieve from my doctors and nurses that allows me to finally be able to enjoy my life.

Chronic pain and daily bleeding are unfortunately still a very big issue for me, but that's not anything I'm not accustomed to. I spent the entirety of today on my living room couch, with the exception of bathroom trips and taking my dog outside. I woke up in so much pain that getting out of bed in itself was extremely painful. It was just a bad day from a chronic pain standpoint. I tend to beat myself up for having days where I don't do much (or barely anything at all). I compare myself to family members who work super hard, or same-aged peers who have kids, and juggle having families along with careers; I then feel super guilty for not doing more.

I have had a relative lay into me this past year about not finishing school, not being financially independent, and for not doing more with my life (and tell me that's why I'm depressed). I've always worried that that's how others may view me, and the relative telling me that just amplified my insecurities to the max. I know the cure to those anxieties is to simply not care about what others think, I'm just not quite there yet.

And because I am so accustomed to the bad daily pain and some bleeding, I forget that those are not things that the regular person experiences...I forget that there are people who don't have to contend with those things on a daily basis. So sometimes I have to give myself a reality check, and along with that reality check I have to give myself some grace, too. For some people, it really is about just getting through the day sometimes, and I guess for now I happen to be one of those.

I know this is such a random post, but if there is anyone out there who can relate at all, know you are not alone, and that I am proud of you for getting through your day. ♡ No matter how much you may have done or not done today, you are a worthy human who is very much so deserving of praise the same way in which others are.

Off to bed.

Talk soon ♡

Ari

19/06/2025

Hey guys! ♡

All is stable at the moment ( : I would love it if it would just stay this way forever! For now, I am enjoying each minute that comes along.

I attached some pictures from Father's Day this year. It's a day I look forward to each year, as I was blessed with the best father I could have ever asked for. He helped get me through all of my hospitalizations, whether it was an emotional phone call to him while inpatient at 2am or him bringing me up my favorite pastries. No matter how much he had worked that day, he was at the hospital with me daily (with very few exceptions).

I'll give you a quick example of the kind of Dad he is.

Several years back, MAC cosmetics was coming out with a Selena Q collection, and there was a lot of hype that was built up around it. I was a huge fan of her and a total makeup ju**ie and I wanted nothing more to get my hands on some of the items like the eyeshadows and lipstick. I planned on going to the MAC located near my house on opening day, but ended up getting hospitalized with a bad infection shortly before the day of the release. My makeup obsessed self was very bummed to say the least, lol.
Well, my Dad went to the mall on the day it came out and waited in a 45 minute long line to get into the store with along with the other fans. He picked me up some of the lipsticks and eyeshadows I had been dying to get my hands on (he went right after having got out of work at his night shift job). He brought them up to the hospital with me later that day, and I was so overjoyed. I still have the pieces he got me set aside as a beautiful memory.

This is just one of many examples of many times he had done something like this for me.♡ I treasure every day I get to spend with him.

Also, Mom and Dad just had their 40th year wedding anniversary a couple of days ago! We are going to celebrate it this weekend, and I can't wait!
I pray so hard that they have many more years of good health and happiness together.

- Ari

12/06/2025

Hey guys!

I am so angry at myself, as I just wrote a long post on here telling you guys about everything that has been going on, and then somehow I accidently deleted it. 😬😬😬 In the interest of time, I am going to try and paraphrase.

All is stable at the moment in terms of my KTS. I am still having a very hard time with my normal chronic pain and the thrombophlebitis, but nothing acute is going on.

I booked my operation with my interventional radiologist for the end of October. I am very nervous to be in hospital environment again (even though it will only be for a little while) in addition to the pain I will feel after. I know that I am in the best of hands with my Dr. and his team, so I am not nervous at all in that aspect. As reluctant as I am to go through a tough healing process again, I know my day to day quality of life will be so much better after. I am really looking forward to that. ♡

I am in the process of spearheading a new volunteer project that will hopefully help to give back to a place that has helped me so much. I really hope it will also help to raise the spirits of some sick people. I am still in the process of initiating everything, but I look forward to sharing more with you guys soon.

Sending everyone loads of love. Xo - Ari

03/06/2025

Hey guys ♡
I hope that everyone is doing well.
I am in a relatively good place right now health wise. The main thing bothering me is the thrombophlebitis in my Klippel calf.
I've had it for over a year, and it was relatively stable for the vast majority of last year. This year, however, it is causing me a lot of turmoil pain wise. The past couple of weeks have been really tough. In the past, there would be times when, for example, for a day, it would cause me tremendous pain, and then the following 3 days it may completely disappear. In the past couple of weeks or so, it hasn't disappeared at all. It's a constant pounding sensation; it feels like there is a baseball stuffed into the side of my leg, causing me immense pain at all times.

What concerns me is that I am completely maxed out on all of my pain medications; my doctor recently prescribed me a new medication on the market called journavx. It apparently works like an opiod without the systemic side effects. Insurance is refusing to cover it right now. They are requiring a pre-authorization (because why would they ever make anything simple). Hopefully, that will go through, and I will get to try it and be able to derive some kind of pain relief from that.

All in all, though, I am doing OK. I can be in really bad pain sometimes and still manage to be somewhat productive; I think a lot of us chronic pain patients out there have learned to be as a survival skill. I can be chatting with someone and laughing and telling jokes. Meanwhile my body is screaming at me on the inside. It's not so much me trying to put on a facade, as much as I am just trying to enjoy my life and not focus on the pain.

I had a dream a couple of weeks ago that brought me to tears upon awaking. I was present in my old former childhood playroom at home, at the age I am at now. However, I was watching myself play as a child; I looked to be about 4 years old. I was laughing and smiling while playing with my dolls. The adult version of me looked at the younger child of me, and immediately felt a sense of sorrow..I looked at my younger self and thought, "oh, the pain she is about to go through in life. " I then went over to my younger self and embraced her, and gave her a little kiss on the head. I awoke that day feeling extremely emotional.

I must remember that I am still that young girl inside; while my outer appearance has changed, I still possess the same soul. I may not be able to control some of the life events that have happened and will happen to me, but I can still do everything in my power to do right by myself.
To do right by my younger self is to make sure that I am taking care of myself by getting lots of rest, eating proper nutrition, and continuing to do everything in my power to nurture my mind, body, and soul. ♡ I have not totally succeeded in doing all of that yet, but I'm working on it. - Ari

29/05/2025

2009, I had just graduated high school. I had hid my Klippel-Trenaunay syndrome for nearly the entirety of my life, and was quite sick of doing so; I felt like I had so much story bottled up within me, that it was ready to errupt momentarily.

While I undoubtedly yearned to tell my story, a part of me was a bit reticent to do so, partly due to not knowing where to begin. However, there was a big part of me that was hesitant to do so out of fear - I was scared of what others would think. For years, I had carefully crafted an image, this facade, of being a happy, well-adjusted teenager (and soon to be young adult).. one who was rather content in their body and the circumstances it surrounded me with. Inside, however, there had been a storm brewing for quite some time.

Later that year, I came across an article in Marie Claire called "What the Guys I Date Don't Know" by another fellow KT woman named Carla Sosenko. I was immediately drawn in by her writing prowess. And, although I had barely entered into the dating world at that time, so much of what she said about our condition resonated with me. I felt so seen and understood, perhaps for the first time in my entire life.
Reading that article evoked such immense inspiration within me. Seeing her words really helped to propel me into a state where I felt ready to face the world and to stop hiding... She had given me heaps of newfound courage.

My whole world changed after reading Carla's article. I started a blog and began to detail elements of my life that I had never before exposed to anyone - not even those closest to me.

I could only dream that one day, maybe I could inspire another KTS patient to embrace their journey the way in which Carla had helped me to do so with mine.

Now, even 16 years later, Carla is still one of my biggest inspirations. She has not written a book called "I'll Look So Hot in my Coffin: And Other Thoughts I Used to Have About My Body." In it, she shares what it is like to live with her deformity. She also writes about her quest to find freedom and joy in her body.

I cannot wait to get my copy ♡ and I am so beyond elated that I am going to get to meet Carla at her book-signing in Boston at the end of June!

Order here: https://www.penguinrandomhouse.com/books/720681/ill-look-so-hot-in-a-coffin-by-carla-sosenko/

Address

Website

http://kissesforkts.blogspot.com/

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