How old are you?

12


How did you find out that you had FAVA?

I just went to a lot of doctors and eventually realized that there was something wrong. My right leg didn't look identical with my left. I had a lot of severe pain and most kids don't usually have that unless there is something wrong.


What did your doctors tell you?

I saw a lot of different doctors! I probably saw 20 different doctors and they weren't confident with what it was. They made decisions based on the look of my leg but didn't really dig in deep to find out why I was having so much pain.


So how did you finally find out that it was FAVA?

I went to Boston Children's Hospital by recommendation hoping to find a doctor that knew what they were talking about. They have a Vascular Anomalies Clinic there with a team of doctors. The first time I went there, I met with so many doctors all at one time. There were Interventional Radiologists, a Dermatologist, Orthopedist, a Radiologist and a nurse practitioner that met with me and my mom to determine what was happening with my leg. they got part of the diagnosis correct, but missed some things too. They did an ultrasound of my leg then they claimed that I had a lymphatic malformation. At that time no treatment options were offered to me.


I went back a year later and met with another doctor who agreed that I did have a lymphatic malformation but I also had venous malformations in my leg as well. He was the one that told me I had Fibro Adipose Vascular Anomaly or FAVA.


What does it feel like to have FAVA?

Bad. It just hurts all the time and you never really get a break.


Does FAVA make it hard for you at school?

Yea. Over time we learned to make adjustments to everything I did and basically I had a different school life than all my friends. Everything was a little bit different for me.


Different how?

For example, When the class had to walk downstairs to an assembly the teachers would have to send me down on an elevator or I would leave early and most kids would think I was lucky but they wouldn't understand that I would actually prefer to walk with the class or take the stairs. But you have to sacrifice some stuff so that your pain doesn't get too unmanageable.


Do you have any special accommodations at school?

Yes. I can leave early from each class, I can take the elevator and I'm excused from gym class. I also have a rolling backpack and an extra set of books. A lot of teachers respect my needs but not all of them can understand what it's like to be me.


What's it like to be you?

Sometimes I wish that I didn't get the body that I got only because I have trouble with it. It's hard to explain. I don't think most people get how bad I feel every day. But I do my best to laugh all the time and just think about how I don't have the worst situation.


Are there things that are difficult or challenging for you?

Yes. Most activities are challenging because of movement and I choose not to participate because I don't want to put myself in excruciating pain. I don't think anyone would want to do that to themselves.


Where is the FAVA located?

I have two masses in my inner thigh, I have one lesion in the crease of my knee, I have a lot going on in my calf even though you can't see it and the most annoying mass is on the instep/arch of my foot.


Have you had any procedures to address the FAVA?

FAVA can't be cured entirely but we are willing to try different procedures to limit my pain. I have had three procedures in total in the past year. In August of 2013, I had a CO2 Laser treatment from my inner thigh to my calf, sclerotherapy in the first mass in my thigh and two coiled veins to eliminate the chances of a pulmonary embolism. My Second procedure was in March of 2014 and consisted of cryoablasion in the same mass of my thigh with a more conservative treatment to the mass in my foot. The most recent procedure was in June of 2014 and we did cryoablasion once again on the second mass in my thigh with a more aggressive treatment to my foot.


Wow, that's a lot of procedures, you must be very brave!

Thanks! I think FAVA may not be great but it definitely helps me stay strong. God only gave me what I can handle and I've learned to accept that FAVA is a part of me, but not who I am.


DO you take any medication to help with the pain?

Yes. Most often, after procedures I take a strong medication called oxycodone to keep my pain at bay. I also take Motrin and Tylenol to keep my surgical pain in control. I have given up on daily pain medications that are over the counter because they do not help at all. I was prescribed gabapentin recently to relieve nerve pain.


It seems like an awful lot to deal with for a 12 year old girl. What helps you to focus on other things?

Swimming! I love to swim because I am buoyant in the water! I don't have to put as much pressure on my foot and I can still have fun with my friends and family.

An Interview with Juliet

The FAVA Foundation



​Planting a seed of Hope for Fibro Adipose Vascular Anomalies

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and informational purposes only, and should not be construed as personal medical advice.