Written by Eirini Giannakidi
Being a busy student, balancing schoolwork, hobbies, and having a social life while being active with my member organization is undoubtedly not an easy task. But it can be possible with team effort, putting realistic goals, and perseverance.
First, I would like to share all our accomplishments for HAE day because a lot has been done, and it is something to be proud of when looking back.
This year, for HAE day, we were able to run an online awareness campaign for HAE. We shared an animated video explaining the main symptoms of HAE and how someone can get help to get diagnosed. Our campaign was also shared on popular websites like CNN Greece, medical news websites etc.
We also participated in a press conference that aired on our YouTube channel, sharing how patients experience misdiagnosis and how proper treatment can transform their everyday life.
Furthermore, we were able to launch our new website for HAE Greece (kaoelladas.gr). We have gathered important information about our organization, HAE and how to manage it in every aspect of life, and legislation so patients can know their rights as a patient.
Lastly, we created some informational leaflets so we can share them in the future at emergency departments, as well as emergency cards for our members.
So how did I manage to be part of all of that? We were lucky enough to get help from some fantastic people that worked with us with these tasks, but there was still planning that needed to be done, as well as frequently getting back with them on how we wanted it to be done.
Being a patient or a caregiver of someone with HAE, gives you that experience. It makes you an “expert” on how someone lives with HAE. We have all been there; therefore, I could see myself not struggling to find how we should deliver a message to an undiagnosed patient, a worried mother, or a child. Because that was me in the past.
To make this work, we scheduled our calls when we were not working or had school and were always in contact in our group chat. At the end of each meeting with the companies we worked with, we had a separate team meeting to discuss and agree on things together. Some days, that was impossible, so someone joined the calls and let the rest of us know.
There were days when there was no time for texting, so voice messages saved the day. I would suggest finding every way possible to be in contact and being realistic about what you can and can’t do at that time.
I think we need to realize that, as patients, our perspective is so important. You could really see that each of our opinions and ideas completed the others’, so the more people involved in their MO, I think the best results you will see in the long run.
I believe that youngsters are a vital part of the HAE community, and even though I can see how it may feel challenging to be involved, at the end of the day, it gives you so much joy to create things that make the future of HAE better. The idea that the same struggles I have been through can no longer be a problem for someone, or it can be easier for them makes it all worth it.
It really gives you hope for the near future.