I was diagnosed with Dysautonomia after collapsing at my freshman homecoming dance on October 23, 2010 and since then my life has completely changed from the normality I once knew. My days have been filled with fainting episodes, seizures, migraines, low blood pressure, tachycardia, all over body pain…..the list goes on. That’s because Dysautonomia effects the Autonomic Nervous System which is the part of the brain that controls all of the body’s involuntary functions. Therefore, it affects the whole body. After attempting to go back to school numerous times to no avail, I was placed on homebound. I was never able to go back to the classroom.
Over the years I’ve been placed on numerous medications and have gone through many different forms of treatments in order to try and tame my symptoms. The medicines help keep my condition at bay but the treatments I went through did not work. I tried intravenous immunoglobulin (IVIG), a treatment like chemotherapy, for three years and up until a year ago it worked decently. However, its positive benefits wore off and the excruciatingly painful side effects remained. I decided to stop receiving the IVIG because of this. I began to accept the reality that I just wasn’t going to get better.
God gave me a glimmer of hope soon after.
I heard about Celltex though Sarah Hughes whom I have heard about over the years from my doctors. We finally met at a Dysautonomia conference and I was shocked that she was not in a wheel chair and in the severe condition I had heard she was in. Sarah and her mother explained the stem cell therapy they had decided to try as a last resort, and they sang its praises. After years of being disappointed by failed treatments I was a bit hesitant, but seeing Sarah walking without the feeding tube and looking healthy definitely got my attention. I ended up watching her documented experience with Celltex on YouTube to gather more information and I was brought to tears. For the first time in years, I felt so much hope. I wanted to give this option that I didn’t even know existed a try.
A year later, and the day after my 20th birthday, I was walking my fiancé to the door to see him out when without warning, I collapsed. I’m usually given a warning before my episodes but this was without any sign. The most shocking part to me was that I hadn’t had a fainting episode in over a year. Being caught off guard, I fell backwards and felt my skull slam hard into the tile floor. I came to about a minute later with my mom and fiancé hovering over me incredibly worried. My head was throbbing and had sharp stabs of pain. I tried to sit up, but I began to slightly panic when I couldn’t move my neck. The moment I tried I began to feel pain building up. My fiancé, mom, and dad had to work together to help me up and carry me to the car where I was then rushed to the ER. After being assessed and undergoing a CAT scan and X-ray, I was lucky to be told I had a bad concussion and a cervical sprain. It could have been so much worse.
This was the event that caused my family and I to say “enough is enough” and we began raising funds for me to be able to get stem cell therapy.
Long story short, when it finally came time for me to start the whole process for stem cell therapy, everyone at Celltex was so amazing and helpful. Everyone I came across was so incredibly kind and we had someone to guide us every step of the way. Words can’t describe how excited I was when I first entered the hospital in Cancun where I would receive my first round of stem cells. After the infusion I was tired and slept throughout the next day, but when the second day after the infusion came I woke up and was shocked when I got up. I didn’t hurt. Usually everything hurts when I get up, but not this time. I was in amazement because I had forgotten what not being in pain was like. I had energy and the heavy fatigue that usually weighed on me was not present. The next day came, and I was able to read a book for four hours straight without any problem at all. I couldn’t read like that before because it was extremely difficult for me to process the information I was reading and I would always develop a migraine if I read too long. After my time in Cancun passed and I came home, I began noticing small improvements. I could think more clearly, I could do more things, and I wasn’t in as much pain. Every day has been different. I still have my off days and a majority of my symptoms, but just having these little improvements brings me so much hope and I’m barely a month in from first receiving my adult stem cells. I owe it to Celltex and for their mission and research. I greatly look forward to what the next few months will hold for me.