Accepted
Since I started this journey, I've held close a sense of responsibility to not let others suffer unnecessarily. It has been truly eye opening to see the amount of intelligent, capable, well-trained medical professionals that let HSD/ EDS patients fall through the cracks.
Ehlers-Danlos Syndrome is a genetic disorder on the Hypermobile Spectrum of connective tissue disorders. There are several types of EDS that vary in severity, systems affected, and genetic deletions or malformations. "Typing" these conditions is important to the patient because it can help their medical team and support system plan more effective treatments and maintenance routines.
This is why advocacy and education are important. When I figured out that I may have this disorder, I immediately joined the Ehlers-Danlos Society. They're a world-wide advocacy network that provided me enough support and access to information to feel comfortable talking to my Dermatologist about this being a possible diagnosis. I immediately noticed that they were doing Patient Advocacy Training, but that it had already started and there was no word on the next group dates.
So I waited. I've done a TON of research on my condition. I've interacted with fellow EDS patients on the message boards. In April, I saw a little button on the advocacy page that said, "start my application." And so I clicked it. I filled out a few questions, crossed my fingers, and hit "submit."
By the time Memorial Day came along, I hadn't necessarily forgotten about it, but I didn't have much hope that I'd be selected. It's a WORLD WIDE network. I've been officially diagnosed for less than 6 months.
I woke up this morning to an email in my inbox from the EDS ECHO coordinator telling me I had been accepted into the program!
I'm so excited to take this seven- week virtual training course that will give me a platform to help other EDS patients by educating medical professionals on how to recognize classical markers of hypermobility and make appropriate referrals.
We're going to receive training on what advocacy is, public speaking, how to present what HSD/EDS is, social media, fundraising, political awareness and lobbying, and how to understand the research and trial process. It will be 90 minute sessions, once a week, starting June 3 via Zoom. We're all encouraged to participate, on camera, in real time and work together as much as possible during the session.
So, while this whole pandemic situation is not ideal, losing my job has turned out to be more of a blessing than anything else. I took a part time job doing call center recruitment work from home, and that has removed a LOT of trepidation I have about speaking in front of people and talking to people I don't know. I have had a lot of time to think about what I want and need out of my life and how to make those things happen. I'm really excited to take this step and make a difference for people.
Ehlers-Danlos Syndrome is a genetic disorder on the Hypermobile Spectrum of connective tissue disorders. There are several types of EDS that vary in severity, systems affected, and genetic deletions or malformations. "Typing" these conditions is important to the patient because it can help their medical team and support system plan more effective treatments and maintenance routines.
This is why advocacy and education are important. When I figured out that I may have this disorder, I immediately joined the Ehlers-Danlos Society. They're a world-wide advocacy network that provided me enough support and access to information to feel comfortable talking to my Dermatologist about this being a possible diagnosis. I immediately noticed that they were doing Patient Advocacy Training, but that it had already started and there was no word on the next group dates.
So I waited. I've done a TON of research on my condition. I've interacted with fellow EDS patients on the message boards. In April, I saw a little button on the advocacy page that said, "start my application." And so I clicked it. I filled out a few questions, crossed my fingers, and hit "submit."
By the time Memorial Day came along, I hadn't necessarily forgotten about it, but I didn't have much hope that I'd be selected. It's a WORLD WIDE network. I've been officially diagnosed for less than 6 months.
I woke up this morning to an email in my inbox from the EDS ECHO coordinator telling me I had been accepted into the program!
I'm so excited to take this seven- week virtual training course that will give me a platform to help other EDS patients by educating medical professionals on how to recognize classical markers of hypermobility and make appropriate referrals.
We're going to receive training on what advocacy is, public speaking, how to present what HSD/EDS is, social media, fundraising, political awareness and lobbying, and how to understand the research and trial process. It will be 90 minute sessions, once a week, starting June 3 via Zoom. We're all encouraged to participate, on camera, in real time and work together as much as possible during the session.
So, while this whole pandemic situation is not ideal, losing my job has turned out to be more of a blessing than anything else. I took a part time job doing call center recruitment work from home, and that has removed a LOT of trepidation I have about speaking in front of people and talking to people I don't know. I have had a lot of time to think about what I want and need out of my life and how to make those things happen. I'm really excited to take this step and make a difference for people.
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