Sara Syndrome

I have had medical problems since high school, with some issues starting to arise in middle school, and my family, friends, and I always joked that I was not sick in the traditional sense of the word, but rather that I was "Sara Sick". This simply meant I did not have an identifiable illness or condition, but I did not feel well. At the time I could have never guessed how accurate this statement could be!!!

My wonderful neurosurgeon Dr. Rekate at The Chiari Institute in New York has actually named a syndrome after me! He has begun researching what is called Sara Syndrome. A syndrome simply means "a set of medical signs and symptoms that are correlated with each other". In this case there are 5 signs and symptoms that make up Sara Syndrome: Ehler's-Danlos Syndrome, dysautonomia, pervasive pain/fibromyalgia, Chiari 1 Malformation, and craniocervical instability. Many patients have one or more of these conditions, but his theory is that when a patient has all of these conditions, as I do, there is something more going on. He theorizes that Sara Syndrome is a genetic condition that is not yet discovered that encompasses all of these conditions. I was one of his first patients with all of the conditions fairly severely and after meeting with me his interest was sparked enough to begin researching this new syndrome. 

Here is a video of a talk that Dr. Rekate did on Sara Syndrome (the name of the video is spelled incorrectly) if you would like to get more information on this topic. Also, as a clarification I do still have my port and do IV fluids on a regular basis. Even brilliant men get mixed up sometimes ;)

I am so grateful to Dr. Rekate for everything that he has done for me and the quality of life that he has restored to me. I feel incredibly blessed that not only have I been able to receive a new quality of life, but my journey has helped other people to get the care that they need as well. My medical journey and conditions are helping Dr. Rekate help other people and for that I am eternally grateful. To this day, nearly 2 years after initially meeting Dr. Rekate, he continues to explain to patients about Sara Syndrome and how it affected me and my journey. I have other people contact me and ask for information and support because they have found me through various groups on Facebook. For anyone needing support for any or all of these conditions please feel free to contact me and I will do my best to help in any way needed!