Shanthi Hegde doesn’t like to be uninformed. The biology major at Northeastern University in Boston who plans to be a doctor loves medical research. But when she was diagnosed with von Willebrand disease (VWD) at age 19, after menstruating for almost nine months straight, she walked out of the health care provider’s office feeling very uninformed.
“When I first saw a hematologist, I had never heard of von Willebrand disease, and they didn’t give me much information about it. I ended up just doing a Google search,” says Hegde, a native of Cumming, Georgia.
She learned that VWD affects 1% of the population. As she dug further, she discovered the National Bleeding Disorders Foundation (NBDF) website, where she learned more about her condition and found a community that offered guidance and understanding.
“It was really nice to have a community to go to as a newly diagnosed patient,” she says.
Hegde felt grateful to the organization. But her disease was not easily remedied. She developed anaphylaxis while taking desmopressin, and then couldn’t tolerate any antifibrinolytics (they caused nausea and vomiting). And her bleeding continued.
She attended conferences on bleeding disorders. There, she met doctors who guided her to demand tests, question her physicians, and keep at it until she had answers. Soon afterward, she learned that she also has factor VII deficiency. With community support, successful treatments followed.
Around this time, Hegde “stumbled upon” NBDF’s National Youth Leadership Institute, applied, and was accepted into the 2023 NYLI cohort. “I am so thankful for the opportunity,” she says. “I have gotten to meet some amazing friends from all across the United States who have VWD, who have platelet disorders, who have hemophilia.”
Today, Hegde is an NYLI representative on the NBDF Board of Directors and has started Husky Hemophilia Group at Northeastern, which provides education about bleeding disorders and support to people who have one. Husky Hemophilia Group brings in speakers, advocates for bleeding disorders with elected officials, and helps educate the university community. Finding the confidence to start the group began with her involvement in NYLI.
“The benefit of connecting with this community is just learning from everyone and feeling that you’re part of a family,” Hegde says. “Young adults are the next generation that are going to be change makers in the bleeding disorders community, and it’s super important to stay involved so that we can be the voice and the power of the mission.”