Sarina is a young woman living and working in San Jose. She was born with venous vascular malformation (VM), a condition of abnormally developed veins which can stretch or enlarge over time. Her VM is located in her right hand, right arm, neck, and shoulder. There, the skin is swollen with dark lines resembling a map of blue spider webs. “The way my doctor explained it to me, was that if people have veins that are like sidewalks, mine are freeways. They are a lot larger than usual, and very congested – they can’t move blood as fast as in other parts of my body.” This congestion causes swelling, and often, intense pain. Her symptoms include numbness, burning, tingling, and the restricted use of her right hand.
VM | Sarina, Born April 1995 | San Jose, CA
Sarina wears a custom compression sleeve that covers from above her right elbow down to her fingertips. It’s specifically measured and fit tightly to every millimeter of her arm and hand. Sarina keeps the sleeve on almost 24/7, as it helps with swelling and “keeps everything more intact,” she says.
The first signs of Sarina’s VM showed when she was born with a dark blue hue around her neck and arm. When she started feeling excruciating pain at the age of six, the doctors decided to perform an “experimental surgery” where they cut, removed and cauterized Sarina’s veins. “Within a month,” recalls Sarina, “everything grew back, but worse.”
Sarina had no diagnosis until she was fourteen and her family was introduced to the Vascular Birthmarks Foundation (VBF). They attended VBF’s annual convention and met VBF’s president and founder, who referred them to a VM specialist in New York City. “Dr. Rosen was the first person to say, ‘You have Vascular Malformation and I can help you,’” remembers Sarina.
“I’ve learned to really not take my good days, or anything, for granted.”
In New York, Dr. Rosen performed sclerotherapy, in which a liquid foam-like solution is injected into the veins, burning and shrinking them. “My veins are very aggressive,” says Sarina. “And when I hit puberty, they became extra-aggressive.”
Her family made trips to New York every two to four months for surgeries to try to keep up with her veins’ regrowth. During the painful recovery time, which would take up to a month, Sarina would be stiff and swollen, sometimes unable to leave her bed for days at a time. A consistent routine became nearly impossible, forcing Sarina to leave high school and be homeschooled.
After her homeschool years, Sarina went on to receive a BA degree from UC Davis. She took every summer break from college to have surgery in New York, but after graduating from university, has decided to take leave from surgeries altogether. She works hard to manage her own pain by using heat, cold and getting a lot of sleep. “Elevating is the big thing,” explains Sarina. “I sleep pretty much upright with all my pillows. If I lay flat for too long, everything swells in my neck.”
Despite the difficulties, Sarina has learned how to move resiliently through the world. She’s working, applying to master’s programs, and remaining grateful. “The days that I do have pain make me realize that the days without pain are my best days. I think a lot of people take their health for granted. I’ve learned to really not take my good days, or anything, for granted.”