Nina Perez knew something was wrong when her symptoms started to progress. She never dreamed that her diagnosis would be Budd-Chiari Syndrome with Myloproliferative Disease along with a Jack 2 Mutation. She shares her story below.
When I was a sophomore in college, I was having stomach issues.
I wasn’t able to eat, never slept a full night, and my stomach had become enlarged. Each day became worse and worse until I was admitted into the hospital on April 10th, 2011. The doctors could not figure out what was wrong with me until I was released early on April 14th. On April 15th, I was rushed back to the hospital, in pain, crying from it’s intensity. That was the day they realized I had three blood clots in my liver.
I was placed into surgery that night and was under watch for 24 hours because they thought I would not make it through the night. I was placed in the ICU under heavy medication for a week and then spent the rest of the month in The Children’s Hospital at Montifiore.
I was only 19 years old and was told that I was a rare case. My disease happens to one in a million people. My whole life changed after I was diagnosed. I was no longer able to drink, I have to watch what I eat, I was placed on medication for the rest of my life, and I cannot do things that I used to love. There is no cure for my condition and it seems as though it continuously gets worse, as they found another blood clot in my body in December 2014. I keep living with my head held high and keeping a positive outlook on life. I may have been stopped from doing some things I love but I will not let my disease hold me back. Any one going through a rough time, or don’t know who they can reach out to, don’t give up! I gave up plenty of times and thought that I would never be happy with my condition, just never give up hope.