Hello, my name is Christina, I’m 20 years old, and this is my story. My sister and I were born with a rare genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). EDS is a group of inherited connective tissue disorders that affect the collagen in the body. This means that the tissues of the body are very loose and fragile, especially the ligaments and the skin. My body cannot hold itself together, I am literally always falling apart, and I can expect daily dislocations.
The condition affects my sister and me very differently. I am considered a severe case, while my sister is considered as a mild case; she barely experiences any symptoms. In my case, the syndrome has greatly affected every organ of the body, and has left me with a long list of secondary conditions; these secondary complications are often more debilitating than the EDS itself.
It was not until I was 11 years old that I started to show the real symptoms of EDS. I was a competitive gymnast as a child, and I always knew that I was flexible; I was always surrounded by very flexible people and sporting injuries, so I thought absolutely nothing of the fact that I was hypermobile. One day, the whole family came down with a viral illness, including myself. Everybody else got better, except for me. The illness dragged out for months, and as time went on, I was picking up other illnesses too. My body just wasn’t recovering; a simple cold would become pneumonia or a sinus infection. I started to develop allergies, I could barely hold down food, I was suffering from joint pain, back pain and headaches and I was exhausted a lot of the time. These symptoms continued for years, I spent most of the time desperately trying to keep up with my schoolwork whilst also searching for a diagnosis.
One day, when I was 16, I started noticing some new and alarming symptoms; my vision was becoming affected. I would be reading one day, and the room would begin to spin and shake, causing me to fall to the floor. Words would move around on the page, and my balance and coordination were affected too. I had a brain MRI, and doctors found that I had a ‘Chiari Malformation’ (when the lower part of the brain pushes down into the spinal canal, blocking the flow of blood and fluids). I underwent brain surgery to allow enough space for my brain to function properly. In some ways, and after years of worrying, I felt somewhat relieved that I had finally been diagnosed. To begin with, the surgery helped, but as time went on my symptoms returned. I was now, experiencing violent muscle spasms, projectile vomiting and fainting spells. My surgeon told me that there was nothing else he could do for me. I was devastated. After years of suffering, my hopes turned to hopelessness; the only doctor that ever helped me was no longer interested in my case.
Enough of feeling sorry for myself, I took to the Internet and researched for myself. One particular night, I stumbled on an episode of ‘Mystery Diagnosis’. I was astounded at how similar my case was to the patient on the show; she had a Chiari Malformation, but more than that she also had EDS! Unlike my case however, the patients was also diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a chronic condition causing her to faint. I convinced my parents to take me to get my genetics tested. The results came back confirming that I had EDS and POTS. Finally, I felt like I had found the missing piece of the puzzle.
Since this diagnosis, a lot has happened. My spine was becoming so unstable, I had lost the ability to walk, and I lost all control over my arms and hands. I’ve since had 9 brain and spinal surgeries to hold my spine together. My ability to swallow had deteriorated; a feeding tube was placed in order for my body to gain the right nutrition. My body now relies on countless medications to function properly, nebulizers, treatments and home IV saline infusions. The situation is far from ideal, but I am grateful that these daily rituals improve my quality of life.
What saddens me the most is that I am unable to attend school. I hope, one day, that I will return to education. My dream would be to work in the medical field, this is where my passion lies, but I’m not sure my immune system could handle being around sick people. In the meantime, I spend a lot of my time painting, making YouTube videos and reaching out to other patients online; advocacy, support, and awareness are three things that are very close to my heart. Whilst searching for a diagnosis 4 years ago, I can remember scouring the Internet for anyone else my age who was going through the same experience. I found nothing. There were no resources for patients like me. It was then that I decided this must change, I made it my goal to reach out to as many people and help them navigate through this tricky journey. Social media can really help to find support, friends, and people who simply understand.
Currently, there are no cures for my illnesses, the best thing that I can do is to treat my symptoms and secondary conditions as they arise and to do very gentle physical therapy to strengthen the muscles around the joints. Chronic illness is for life. I want to be real about this, there are times when I’m sad, times when I’m frustrated and times when it’s really tough; it’s not the life I envisioned for myself, or the dreams I had for the future. However, I can’t let these negative thoughts to consume me. Having a chronic illness has made me a much more compassionate, empathetic and aware person. It has also allowed me the chance to really enjoy and appreciate the little things in life. When you are all swept up in life it can be easy to take the little everyday things for granted. But when you are ill, you are not afforded that luxury. You have to take a step back an re-evaluate all the things that are truly important to you. You have to fight for the little things, and that definitely makes you a lot stronger.
Thanks for reading my Story.
Christina documents her journey with chronic illness on her YouTube channel, please follow the link: https://m.youtube.com/channel/UCjDwOr6zXrn-1I-HiOI9-uA
Christina also documents her experiences on Instagram: https://www.instagram.com/watercolor_me_impressed/?hl=en