Q: What is the name of the SB warrior?
A: My name is Jamie. I don’t have Spina Bifida but, I do have congenital hydrocephalus.
Q: How old are you?
A: I’m 30 yrs old
Q: How can we continue to follow your journey?
A: on IG @shuntedmdphd
Hi, my name is Jamie. I am a 30 years old, living with hydrocephalus. When I was diagnosed at 4 months old no one knew exactly what to expect. Some feared I would not be able to keep up with my peers, let alone excel, some have pre-judged my abilities because of my diagnosis, but thankfully my family never did. I was valedictorian of my high school class, graduated summa cum laude with a bachelor’s degree in Molecular Biology, and am currently in a Medical Scientist Training Program working on an MD and PhD.
A lot went into my decision to become a doctor and do research, but it really comes down to one fact my neurosurgeon told me my junior year of high school, “Half of shunts fail within 2 years.” I had just found out I needed another brain surgery, my 7th surgery and 4th neurosurgery at that point. Doctors, CT scans and surgeries had always been a part of my life, but it was not until that moment that I realized how truly lucky I had been on my hydrocephalus journey and how unreliable the current treatments for hydrocephalus are.
In the last 3 years, while in graduate school, I have undergone 10 more hydrocephalus-related neurosurgeries, including VP shunt revisions, intracranial pressure monitoring and an endoscopic third ventriculostomy (ETV). My once frequent migraines are now daily, but I am learning a new normal, managing and working through the pain. I know I will need more brain surgeries and I will probably never be headache-free, but I am determined not to let it keep me from my dreams. I love getting to help others facing health challenges, as a doctor in training and leading the Houston Hydrocephalus Association Community Network.
Living with hydrocephalus has not been easy, but through it all I have gained invaluable experiences that have helped me realize my dreams and that will help me to be a better physician and researcher. I truly believe that there is a purpose behind all the pain. I can see how my struggles and seeming disabilities helped me get to where I am today. They enabled me to hone my problem-solving skills, taught me to ask for what I need, and inspired me to use my talents to help others facing health challenges. Always keep an eye out for the blessings within every challenge.
#hydrocephalus #shunt #etv #chronicpain #patient #medstudent #gradstudent #futuremdphd #futuredoctor
Although Jamie does not have Spina Bifida I found her story very valuable. You see, most people living with Spina Bifida also suffer from Hydrocephalus just like Jamie. It is a condition where cerebrospinal fluid builds up in the brain. Unfortunately this requires brain surgery (more then once usually) to rectify this problem which can be pretty scary stuff.But, Jamie goes through all of that with a smile on her face and doesn’t let anything get in the way of her dreams! She is an incredible example of perseverance and dedication! I’m so happy to have met such an inspiring woman and look forward to following her journey!