My story – Tynara
As a child, I spent a lot of time at hospital appointments for seemingly unrelated issues. I was said to be a medical marvel and medical mystery as well as extremely unlucky.
None of my friends had frequent hospital trips and so I found myself giving mini lectures on my appointments at the ripe age of seven. It was perplexing that some of my friends had never even heard of a blood test when I was having several a month. It was so normal to me to have so many hospital appointments that I assumed everyone else did too, but my friends would just stare at me with a mix of shock and confusion when I told them about my appointments.
When I was little, I had to have two baby teeth removed and then when I was 8, I had to go to the dental hospital to have another ten adult teeth removed due to overcrowding, it was like I had two rows of teeth on my lower jaw. I needed braces as I grew up but my teeth were still overcrowding so by the time I was 11, I had to have another two adult teeth removed, meaning I had had fourteen extra teeth. The braces had to go on pretty quickly after this so that new teeth didn’t grow in place and further prolong the process. We didn’t know why I had so many extra teeth, all I knew was that I hated having to get them removed.
I found out I had hypermobility along with some other joint issues. I didn’t think hypermobility was anything to be concerned about but then we realised that it was what caused me so much pain when writing and walking, to the point where I had to get compression gloves to help me write and custom insoles (which I had to have replaced every few months) to help with my walking. My handwriting has always been poor but it wasn’t until I was diagnosed with hypermobility that we found out that that was what was causing this. Unfortunately, they hadn’t caught this in time and we were unable to correct it so I risked losing points on my SATs because of my poor handwriting. Around this time, I was also diagnosed with Sever’s Disease and Osgood-Schlatter’s Disease. But I was young and still didn’t think it was really that bad; I was flexible (more so than I should have been) and people had always envied that, saying I should join gymnastics.
At the end of primary school and the start of high school, I would go to the GP or walk-in-centre for something entirely unrelated and be sent straight to A&E with tachycardia which happened more times than I could remember. I would either be allowed home once my heart rate lowered below 150bpm, or, if it wouldn’t go down, I would be kept overnight for observation. Nobody could work out why I was always tachycardic. I would also get severe chest pain which I was later told could be caused because the ligaments in my chest were too loose. Since I was a baby, I’ve had pectus excavatum which was put down as what was causing some of my chest pain.
We eventually worked out that I also had congenital heart disease; a Mitral Valve Prolapse to be precise. And so, some aspects of my life have had to be limited in order to prevent infection: I’m not allowed to get piercings or tattoos, I can’t drink energy drinks or do high-adrenaline activities. The scariest thing I was told when I was diagnosed at around twelve was that forgetting to brush my teeth could be very dangerous as any plaque could cause infections and infect my heart. This was drummed into me at every appointment and it really scared me. I was only twelve and I was being told that not brushing my teeth could land me in hospital with an even worse heart problem. Thinking back now, my cardiologist was always fascinated by my hands and fingers and would spend a large portion of my appointment staring at them and examining them. A strange thing for a cardiologist to do from my perspective. Of course, now I know why they fascinated her so much: people with EDS tend to have long, slender fingers and mine fit that exactly.
Growing up, people always assumed I was younger than I actually was. When I was sixteen, I was mistaken for being thirteen. I found this happening somewhat frequently when meeting new people, they would be visibly shocked when I told them how old I was and it was so funny to me. looking younger wasn’t the only symptom I had with my skin though; I would constantly be told how my skin was peachy and soft. Every night I would find new bruises on my legs and arms and have no idea how I got them as I hadn’t bumped into anything that day. I was always covered in mysterious bruises.
From a young age I had issues breathing. Doctors could never quite work out if I had asthma or hayfever so I was put on inhalers for over a year. However, they eventually worked out that I had sleep apnea. I had to do a sleep-study in hospital overnight but it didn’t show enough so, I was sent home. At home, I had to be hooked up to a monitor every night that would measure my saturation levels – if they went too low, an alarm would go off. The alarm went off constantly and my mum kept having to wake me up because my saturation levels were too low.
My parents would take me to the doctor and be told they were overreacting about this or that. Doctors didn’t really believe them. I was so young, there was no way I had all of these issues from difficulty breathing to a heart condition. And as I grew up, doctors didn’t believe me either.
My parents were persistent though and kept pushing and fighting for me until doctors finally agreed to give me referrals or look into things more than they had done previously. This included referrals to cardiology, the muscoskeletal team, the Ear Nose and Throat team as well as many others, which all ended up leading to diagnoses.
We didn’t think that any of my ailments were connected. They were just a series of bad luck and things I had to deal with.
Upon doing research on Hypermobile Ehlers-Danlos Syndrome, I began to become shocked with each new piece of information I discovered. All of my seemingly unconnected symptoms were actually symptoms of EDS: overcrowding teeth, a mitral valve prolapse, hypermobility, sleep apnea etc.
I often wonder what my life would have been like if doctors had paid attention to my symptoms at the time and considered that these may be connected. If they had actually listened to my parents instead of saying that they were overreacting. I went through seventeen years of my life with mystery conditions and issues which nobody could quite work out why I had.
I was made to feel as if I were crazy, my parents too, and all because the doctors didn’t think it could be a rarer condition. If they had thought of zebras upon hearing hoofbeats then perhaps my care would have been better and I wouldn’t have been gaslit and not believed for as long as I was. I would have had some answers instead of walking about with a cloud of confusion crowding every hospital appointment and procedure I endured.
These experiences are a large part of what spurred me to start sharing my story and raising awareness, ultimately leading me to helping with this project. If I’m able to help spread knowledge of this condition, then maybe it’ll help another young person who doesn’t have any ideas as to why they have so many strange symptoms. To help them see that they’re not alone, and that it most certainly, isn’t just ‘in their head