One Young Professional’s Advice for Living With Hydrocephalus

At 34 years old, Jamie Wright is on her way to becoming a neurologist who treats adult patients with hydrocephalus. Her patients will one day learn that Wright understands their condition all too well, because she too has been diagnosed with hydrocephalus. Read her story here.

It hasn’t been an easy road. Wright suffers from chronic headaches, has been diagnosed with slit ventricle syndrome and has had 17 brain surgeries. She knows she’ll be dependent on her shunt for the rest of her life. And yet that doesn’t dampen her spirit. To date, she’s earned her Ph.D. in biomedical research, graduated from medical school and is now completing her residency at the University of Washington.

Below, Wright shares her advice for other young professionals living with hydrocephalus:

Don’t let your diagnosis keep you from living your life.

“People with hydrocephalus and shunts, they can still do pretty much anything,” Wright says. “Thankfully the neurosurgeons I’ve come across support that. I know a couple of other doctors with hydrocephalus and other people who are going to medical school or preparing to go to medical school.”

Focus on your goals.

Most of Wright’s classmates completed their Ph.D. program in about four years. As someone living with hydrocephalus, Jamie took six years to complete hers due to health-related interruptions. “I have to constantly remind myself of the larger goal and that I am dealing with additional challenges that others in my program are not facing. I frequently quote the words of Brené Brown, ‘Stay in your own lane.’ It’s a reminder that I am living my own unique journey, and the only comparison that matters is with myself, focusing on my own growth as a scientist and now as a physician, and not comparing myself to others who have different circumstances than me.”

Be prepared.

“Live your life, but also be prepared and always have contingency plans,” Wright says. “When I travel, I always make sure I have a friend or somebody I know who knows a neurosurgeon nearby, which thankfully I can do with my connections from the Hydrocephalus Association. Haiti and Canada are the only places I’ve been out of the country so far, but I want to go to Japan one day. I’m going to have to have really good travel insurance and contingency plans.”

Here are some specific steps she suggests for other young adults living with hydrocephalus:

• • When you travel, make sure there are hospitals with neurosurgeons nearby. Plan ahead if you can.
  • Carry your most recent imaging with you. Have a USB or a picture on your phone of your recent scan. That way, if something happens, a neurosurgeon will know what your baseline is.
  • Have someone with you who knows that you have hydrocephalus and is aware of your shunt. Even better, carry a shunt card that says what kind of shunt you have, the brand and the setting or wear a medical alert bracelet with information to contact your neurosurgeon’s office and emergency contact information.

Find a good support system.

“A support system is so important and part of that is having the support of your doctors who know your goals and are on the same page,” Wright says. “My neurosurgeon wants me to be a successful neurologist as much as I do. I love that. He is totally rooting for me. Having that support is truly invaluable.”

Practice self-care and reach out to others.

“Having a life outside of medicine is important for all doctors, but I have found that it is especially important when so much of my free time is taken up by my own health needs, with my own doctor’s appointments and self-care. I make an effort to maintain a life outside of medicine, including my own medical care, by spending time with family and friends. I’ve also found that reaching out to help others allows me to maintain perspective. I do a lot of volunteer work with the Hydrocephalus Association as a Community Network Leader and as part of their Peer Support Network.”