How would you describe yourself? A VM Patient

Where are you located? Texas, USA

What types of vascular malformation do you have? Venous vascular malformation

Which part of your body is affected by vascular malformation? Legs/Feet

What has your VM journey been like so far? How has your VM journey evolved over time? I was diagnosed with a venous vascular malformation when I was just a few weeks old. Mine affects my left ankle and Achilles tendon, and from the start, surgical removal was never an option — the VM is too intertwined with the tendon itself. I had several treatments before I even reached kindergarten, though I don’t remember most of them. My mom has told me about the limp I had as a toddler and the battles she fought with insurance because the only shoes that fit were sandals. I’m incredibly grateful for how hard my parents advocated for my care and comfort. For most of my childhood, compression was the only ongoing treatment I needed. But in high school, the pain returned, and I started seeing specialists again. Since then, I’ve had additional checkups and sclerotherapy to help manage symptoms. I now wear a compression sock daily — and while people often assume it’s for an injury, I usually let them think that unless they ask. One moment that really stuck with me happened in middle school. A coach made a joke saying, “If you don’t like your feet, just get a pedicure.” I remember breaking down at home because it wasn’t something a pedicure could fix. It took time, but thanks to the support of close friends and my family, I’ve found a way to move forward with more confidence and less frustration.

How do you/did you cope during hard times with your VM? Honestly, I’ve reached a point in my life where I just don’t care what people think anymore. When I did care too much, it was my friends who got me through it. They didn’t make a big deal about it — they just treated me like me, and that made all the difference.

If you could share a piece of advice for others with a similar condition, what would you tell them? I didn’t even know this Facebook group existed until I was 23, and finding it has been life-changing. Having a support system of people who actually get it makes you feel seen in a way that’s hard to explain. You don’t have to go through this alone — and you’re not the only one.

What is something you learned about yourself throughout your journey? I’m more resilient than I thought. I’ve learned how to advocate for myself, how to educate others with kindness (or sometimes silence), and how to be proud of the body I’m in — even when it doesn’t match what people expect.

What do you wish people understood about you better? That just because it’s visible doesn’t mean it’s a flaw. I wish people wouldn’t assume I’m injured or ask what’s “wrong” — because there’s nothing wrong with having a condition you didn’t choose. I also wish more people understood that it’s okay to ask respectfully, but it’s never okay to stare, joke, or make assumptions.

If you chose to share your VM story publicly, please share information about yourself that you want to share: mid-20s, middle school teacher in Texas. I love reading, especially fantasy and romance, and spend most weekends with a good book or at the coffee shop. I’ve had a VM in my ankle and Achilles since infancy, and this is the first time I’ve shared my full story publicly.