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Hello all, my name is Faith.
I am 27 years old, my diagnosis journey began in 2017. Feb 13, 2017, to be exact. That morning I was awakened from my sleep with really sharp pains in my stomach. I thought it was just the normal gastrointestinal issues I normally live with, being that I was diagnosed to have IBS many years prior, and during this time I was going through a flare. The pain became increasingly intense and after the convincing of my mom and brother, we decided to go to the hospital. X-rays and CT scans showed that I had a rupture in my colon, which required emergency surgery.
I woke up the next day in the surgical ICU where I spent 3 days before being moved to the cardiovascular observational floor, where I spent 3 months. While in the hospital I was questioned by many specialists, and I had multiple tests done. The following year, I spent time between physical therapy, managing a new special diet (low residue diet. I had been on a gluten-free diet since 2011 because of my digestive and IBS problems), and doctor appointments.
February 13, 2019, I had a repeat of the same episode that I had in 2017. This time was a little different. This was the year that my prayers were answered. I had another rupture and had to go through the same recovery and observation process. After being released from the hospital a month later I resumed all of my follow-up appointments. If it was not for the additional research and investigating of my amazing gastroenterologist I would not have come to know about my vascular Ehlers-Danlos syndrome (vEDS).
Unknown to me, he had reached out to a colleague that works in the rheumatologist department of the University of Michigan Medical System. He said that he could only narrow my problems down to connective tissue or autoimmune issues. When he said that my eyes lit up because through my research, that is the same thing that I deduced, after researching rare diseases and coming across The Ehlers-Danlos Society’s website. He set up the referral, and an appointment was made.
During that appointment, my rheumatologist went through my family medical history with my parents and me, and then she began to tell me her recommendations after reviewing my medical history. EDS was mentioned but she wanted to do a physical examination to even see if I qualified for genetic testing. After the examination, I met the requirements and she said that she would refer me to a geneticist for further testing. When I met with the geneticist, she did the same physical examination and explained the type of EDS she was suspecting and would be testing for. Three weeks later I got the results, and I tested positive for vascular Ehlers-Danlos Syndrome.
I must say, this journey has been one of the darkest and scariest times of my life. But through it, I found the meaning to my name to mean more than it has ever meant to me before. It helped to strengthen my faith in God and has shown me the beauty in all things, big and small. This journey has motivated me to not give up on my dreams of helping others, and not to be fearful anymore.
I have been working to educate anyone willing to listen about EDS and HDS and advocate on the importance of patient and doctor relations concerning the treatment of, management of, and education around these syndromes and others alike. I hope that going forward I can encourage others that are going through to know that they are not alone and don’t give up. You are a lot stronger than you think you are. We were created to be resilient beings.Tags: Diagnosis Journey, research, surgery, vascular EDS, vascular Ehlers-Danlos syndrome, vEDS
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