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My name is Isabella and I just turned 22 at the end of May, which is the awareness month for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) back in 2014 and last summer I got the confirmation of my diagnosis based on the new evaluation criteria for hEDS.
EDS has been in my family, but we did not discover it until one day I could not take it anymore. With all the symptoms and discomfort that I was experiencing, I decided to have a shot at finding the cause for it all with the aid of the internet. I know that the internet is no medical specialist, but all the real-life specialists I had been seeing until then just blamed what I was going through on either stress, “some mental trauma”, or things like the shoes I was wearing. It sounds like a joke, but unfortunately, it was not – even though I like to laugh at the assumptions of the specialist that blamed it all on my “trendy shoes”, which were actually not trendy at all.
So, after filling the Google search bar with a list of most of my symptoms, one of the search results ended up being an article about EDS. I carefully checked through most of the results, as I am aware that many “self-diagnoses” conducted online turn out to be wrong, but the article about EDS really did depict my situation. I gave it a shot and spoke about it to my parents. After some further research, medical visits, and waiting, I got redirected to one of the EDS specialist centers in Italy, where I was living, and I got my official diagnosis of hEDS (which was still named EDS type 3 back then).
Now I am living a happy and amazing life in Finland, where I moved for my higher education studies. Thanks to the diagnosis, I now know what “was wrong with me”, which I actually regard as one of my strengths. In fact, hEDS made me even more resilient than I was before and taught me how to cope with pain and how to recognize real friendships and relationships. As I got to experience first-hand how important a diagnosis can be to live a much happier and fuller life than “living in limbo” with all the symptoms and the lack of a name for them.
Thanks to my added resilience and determined personality, I decided that I wanted to try to help people living with rare diseases in the best way I could. Awareness is a huge step towards recognition in various fields, such as the medical field leading to funding for research and more diagnoses, and the social field enabling integration in society and support. That is why I decided that I would devote my Bachelor’s thesis, which I am currently working on, to raising awareness of rare diseases, by combining the knowledge of event and experience design I gained through my studies to such an important and personal cause. The result of this will be an event aimed at raising awareness of rare diseases, especially among university students and specialists in the tourism and hospitality management field – which is the field of my studies.
While working on my thesis, during the month of May, I also took part in some of the activities initiated by The Ehlers-Danlos Society and aimed at raising awareness of EDS and HSD. I raised 616 Acts of Awareness in total, mainly through participation in the Walk ‘n’ Roll Challenge and through a fundraiser that I created in honor of my birthday falling on the last day of awareness month for EDS and HSD. Anyone can make a difference by putting their heart and effort into what they do, and I decided to be one of those people that do so. Walt Disney said, “if you can dream it, you can do it”, and I dream for a world where rare diseases and the people affected by them are recognized and supported.
I cannot make something so big happen on my own, but I am aiming at making a difference for what I can and I believe that by joining forces, all the “dreamers” like me will achieve what we strive for together.Tags: advocacy, awareness, Diagnosis Journey, hEDS, hypermobile EDS, research, Self-Advocacy
Categorized in: Stories