Von Hippel-Lindau Syndrome can be hard to notice until you get the symptoms, so it’s better to get tested earlier than later.
Some of the ways they test you to see if you have the syndrome include getting a MRI of the brain and spine, MRI of abdomen blood, a urinary catecholamine, or a fundoscopy, which is a test that lets doctors look at the back of your eyes. All of these can detect if you have it but sometimes it won’t show up on one test but it will on another test. There are three forms of treatment, but they can also make the tumor smaller. The three forms of treatment are surgery, radiation, or chemotherapy. They all work, but sometimes if the tumor is too big then you can’t get surgery. Some people with VHL get anxiety and have high blood pressure from the tumor. Those are the way people test and treat
VHL. There are people right at now who are dealing with this syndrome and they have to go through so much just to be healthy. People with VHL go through therapy sessions, chemotherapy, the symptoms of VHL, and being in hospital beds instead of going to college or living their life with no worries. Some people get lucky and get to go home cancer free, while some are fighting for their life. It is so tragic how people have to go to therapy, the hospital, and sometimes treatments from their house on a daily base. This is such a negative syndrome because people can die every day, and they have to have medicine to make the pain in their head or back go away. It is important to go get tested for VHL if it runs in your family or it you have the symptoms before it’s too late.