The story of Isabella
Hi there!
I am Isabella and I am a half-Italian, half-Hungarian girl who is currently living and studying in Finland. I have been diagnosed with Ehlers-Danlos syndrome type 3 (hEDS), other than some other disorders – some of which seem to be related with hEDS – such as gastroparesis, various food intolerances and Hashimoto thyroiditis.
Ehlers-Danlos syndrome is a genetic disorder presenting various forms and types, and each individual presents different symptoms and features even within the same type. This makes it particularly difficult to get a diagnosis and some people struggle their whole lives with being regarded as hypochondriacal, or “just stressed/depressed/lazy” and many other assumptions.
I passed through this “stage” as well, having experienced quite comic situations at times. I define them as comic, as being a positive person, I always try to see the good side of things, rather than the not-so-pleasant one. I will give you an example of such a situation, to perhaps put a small smile on your faces. Once a doctor visited me due to my joint instability (in that period my knees were particularly unstable) and his “remedy to all of my problems” was that I had to change my shoes to orthopedic shoes because according to him I just wanted to be “cool” and that’s why I was wearing fashionable shoes that were ruining my health. The fashionable shoes the doctor was talking about were my gym shoes with posture controlling insoles in them which I was wearing that day, and according to him they were the one and only cause of my joint instability. It is safe to say that this was not the actual reason to my problems.
Fast forward a couple of years and at the age of 16, being tired of all the hospital visits without any concrete answer and all the diverse health issues adding up, I decided to take action. One evening I opened Google and I wrote in the search tab all the symptoms I had. I knew that Google was not a doctor and would contain a lot of results that would not apply to me, but I still gave it a try. I went through quite many of the search results and realised that none applied to me, but one: “Ehlers-Danlos Syndrome”. I was still skeptical about Google’s diagnosis, but that was the only thing I could use as a starting point to dig in deeper, and that is exactly what I did. I spoke with my parents, I went through other doctor visits and examinations and in the end my Google aided self-diagnosis proved to be right. I received my official medical diagnosis of the syndrome.
It was such a relief to be able to give a name to such a huge part of me. Finally, I could take the possible precautions against further symptoms and issues that might have arised (some of which still did, and some of which luckily did not), as there is currently no cure for this syndrome.
The diagnosis was a happy moment, rather than a sad one, and it actually inspired me more than ever to never give up, raise awareness on “invisible” diseases and live my life to the fullest. EDS has prevented me from very few things I wanted to do and I am actually regarding it as an ability that makes me stronger and more resilient.Â
For all the people out there struggling with a rare disease, do not give up! Keep following your dreams and passions and achieving great things! Of course by this I don’t mean just do whatever you want and put yourself in dangerous situations. With the needed precautions, you can achieve much bigger things than you would believe as possible. Just believe in yourself and use the strength that living with a rare disease has given you. You can do it! And if no one else belives in you, at least I do 🙂