NYU CAS graduate student Kristyn Millan has struggled with Loeys-Dietz syndrome, a rare connective tissue disorder, for most of her life. But ever since she was diagnosed, Millan has been working to raise awareness and funding for research for the disease, from hosting lip-syncing challenges to organizing 5k zombie runs. Now, she’s planning on shaving her head. While her hair will be donated to cancer patients, the money will be going to fund LDS research.

LDS affects all the cells in victims’ bodies and can affect anyone at any age. The syndrome can also cause aortic aneurysms and aortic dissections — side effects that doctors only recently linked to the syndrome. LDS was first diagnosed in 2005 by Dr. Hal Dietz, a professor of pediatrics at Johns Hopkins University.

LDS has five separate types of severity. Millan and her father are both diagnosed with type four, a milder form of the syndrome. The father-daughter duo both had bad knees growing up, but during her father’s recent double knee-replacement surgery, the doctors saw that he also had an aneurysm in his aorta. During a follow-up appointment with a cardiologist, both Millan and her father were genetically tested and diagnosed with LDS.

“Once we found out we had it, I joined all these groups on Facebook and found that a lot of people have types one and two that are more severe,” Millan said. “A lot of these kids are really sick and I wanted to help.”

Millan has donated her lengthy locks several times before to other organizations, so she was certain that she could easily raise money if she were to shave her head again. If Millan reaches her fundraising goal of $100k, she will shave her head and donate the hair to cancer patients.

Millan also hopes to research LDS herself while completing her master’s degree in biology.

“I am doing my master’s, but I am also working in a lab,” Millan said. “I’m not working with [the genes that affect LDS] but I’ve discussed it with my boss. I will be [working with the disease] hopefully soon.”

Millan also emailed Dr. Dietz in an effort to learn more about the disease. In doing so she found more evidence that LDS is not thoroughly researched at all. Dr. Dietz only knows about 3,000 documented people with the disorder, but there are likely more victims.

“Until now, [the life expectancy] is about 26 years,” Millan said. “But because there’s been more awareness and people are being diagnosed early, you can be on medication that can stop the aneurysm growth and you can also do surgical intervention.”

Most undiagnosed patients appear relatively healthy until they suddenly die because of a rupture in their hearts. Some symptoms are so mild that victims do not realize the cause.

“You can go to loeysdietz.org to learn more about [LDS],” Millan said.

She also added that certain types of doctors know more about the syndrome – like cardiologists and primary care physicians — and will know what to look for in a diagnosis.

To learn more about Millan’s cause, you can visit her Facebook page or her YouCaring page to donate.

Email Han Wang at [email protected].