How would you describe yourself? A VM Patient

Where are you located? Bay Area, CA (formerly Massachusetts)

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

Please specify: Right hip and back down to knee and bottom of left foot.

What has your VM journey been like so far? How has your VM journey evolved over time? When I was born, my parents noticed what they thought was bruising on my leg — they assumed it might have been from the birth. But when it didn’t go away, they started seeking answers. At first, I was misdiagnosed with a hemangioma. One of the doctors we eventually saw recommended we go to Boston Children’s Hospital for a more thorough assessment. That’s where they confirmed it was a venous malformation (VM). I haven’t done the latest genetic testing to determine the exact type. At age 5, I had my first sclerotherapy procedure, followed by the removal of part of the VM on my labia. Throughout my childhood, I underwent around 18 sclerotherapy procedures — some followed by surgical removal of affected sections. The treatments involved using glue and lasers. I was treated by Dr. Mulliken, who is world-renowned in this field, and I worked with different teams over the years. After many of my procedures, I developed ulcerations that required ongoing wound care. Despite all of this, I tried to stay active. I did gymnastics, cheerleading, and softball, but whenever the pain or symptoms flared up — especially after physical activity — I knew it was time for another treatment. At 24, I started developing a severe limp. Through Boston Children’s, I learned I had severe arthritis and necrosis in my hip, likely caused either by the VM itself or as a result of the sclerotherapy cutting off blood supply to the joint. At 25, I had a hip replacement. My surgeon at Brigham and Women’s Hospital specialized in complex cases, often involving tumors, so I felt I was in good hands. The surgery significantly reduced my pain, although I lost over half my blood during the operation and needed eight transfusions. Recovery was long and difficult — but worth it. For a long time, I didn’t know if I’d be able to have children due to the location of my VM in my reproductive organs. At 29, I became pregnant. Because of my VM, I was considered high risk and followed closely by my VM team in collaboration with a maternal-fetal medicine team. I was put on Lovenox (a blood thinner) during pregnancy and for six weeks postpartum to reduce the risk of blood clots, since pregnancy hormones can cause VMs to grow. I had two MRIs while pregnant to monitor the VM’s growth and to make sure they could perform a C-section safely, especially since I also have VM on my abdomen. They also had to ensure I could safely receive a spinal anesthetic rather than general anesthesia, as I have VM close to my spine. Thankfully, both of my deliveries went smoothly. Through that process, I also learned I have VM on my spleen.

How do you/did you cope during hard times with your VM? Throughout my childhood, living with VM was both physically and emotionally difficult. The pain was intense at times, and dealing with a visible difference made me feel isolated. I remember often asking myself, why me? After so many surgeries, I developed a fear of hospitals — especially the anesthesia process. But along the way, certain moments helped me find light in the darkness. One of the most impactful was meeting a doctor who also had VMs. She told me she played tennis and had a full, happy life. That was a turning point for me — it gave me hope that my condition didn’t define or limit what was possible. I also found comfort in small but meaningful interactions. Some anesthesiologists would take the time to use imagination during induction — turning something scary into something playful. It helped ease my fear and made me feel seen. Another moment that stands out was being paired with a girl my age from Missouri who was having her first surgery in Boston. We became fast friends, bonding over an experience few others could truly understand. That connection reminded me I wasn’t alone. These experiences planted the seed for my passion for child life. Child life specialists are professionals who support children and families in hospitals by helping them cope with medical procedures, hospitalization, and emotional stress — often through play, education, and emotional support. After all I had been through, I knew I wanted to help make the hospital experience less scary for kids. Turning my pain into something purposeful helped me heal — and gave me a direction I feel deeply connected to. Living with a physical difference has also shaped my empathy. It’s helped me connect more deeply with others who face visible or invisible differences — and it’s opened my eyes to the injustices and discrimination that can come with them. I carry that awareness with me in everything I do, and it drives my passion to advocate, support, and care for others facing hard things.

If you could share a piece of advice for others with a similar condition, what would you tell them? You are not alone — even though this condition can feel incredibly isolating at times. Seek out connection, whether it’s online, in a support group, or even with one person who understands. That kind of support can make a huge difference. Also, know that your pain does not have to be the end of your story. It can become a source of strength, purpose, and empathy. For me, it led me to a career in child life, where I now get to support other kids going through medical experiences. Finally, be gentle with yourself. Living with VM is a long journey — physically and emotionally — and it’s okay to have hard days. You don’t have to have it all figured out. Keep asking questions, keep advocating for yourself, and remember: your experience matters.

What is something you learned about yourself throughout your journey? I’ve learned that I’m strong — much stronger than I used to believe. Living with VM has challenged me in so many ways, but through those challenges, I’ve discovered resilience I didn’t know I had. I’ve also come to understand that while VM is a part of me, it doesn’t fully define me. It’s shaped my path and deepened my empathy, but it’s not my whole story. This journey has strengthened the connection between my mind, body, and spirit. It’s brought me closer to my faith and to God, reminding me that even in moments of pain or uncertainty, I am held and guided.

What do you wish people understood about you better? Even though I’m a mom now and in my 30s, some of the insecurities I’ve carried about my physical appearance are still there. I’ve grown in confidence over the years, but I still have moments where I wish I could feel completely free — to wear shorts or a bathing suit without thinking twice, without wondering if people are staring or silently asking questions. When I meet a new group of people, they usually don’t know about my VM. Sometimes I still find myself trying to hide it. It’s not about shame — it’s more about the years of navigating stares, comments, or the need to explain something so personal. I wish people understood that even though I appear confident and capable, this part of me still requires compassion and understanding — and that healing is ongoing.

If you chose to share your VM story publicly, please share information about yourself that you want to share: Emily Archer, 36 yrs old, Certified Child Life Specialist and Mom of 2