Speaker: Odessa Durante
Please introduce yourself.
Odessa Durante: Hi, my name is Odessa Durante. I am 19 years old and I have Ehlers Danlos Syndrome.
What's your biggest struggle day to day?
Odessa Durante: My biggest struggle on the daily would definitely be chronic pain. Especially dealing with like migraines and just generalized joint pain and dislocations. Also, neurological symptoms like tremors, not being able to feel like I can really say what I want to say, feeling like I'm kind of trapped in my own brain in a way. And also dealing with POTS. So feeling like I'm just going to pass out all the time having to take a lot of preparation to do daily tasks that are simple for able bodied people like taking a shower. I need a chair, I need my Mom close by in case something happens, it just takes a lot of preparation. And I also really struggle with being able to coordinate my own care, finding all the doctors I need to see, making sure I get referrals and making sure I follow up and being able to keep track of my own medical records and printing them off and putting them into my binder so that medical professionals will take me seriously after I've waited months to finally see them
How has Connective Strength helped you?
Odessa Durante: Before I found the connective strength group, I was severely isolated. I had no friends. I had no connections in my life, mostly because being so isolated because of pain. Also not being in the right like environment. School was very hard for me to make friends just because I feel so different than everybody else. But at connective strength, everybody was incredibly welcoming to me, made me really feel like I belonged there. I deserved to be there. I deserve to have connections and have friends. And I thought, you know, what would be coming to, you know, monthly meetings and having connections. It turned out to be so much more than that for me. And now having people who follow up with me and keep track of my own surgeries and my own appointments and ask me how things are doing. Like actually feeling like I have made really important connections in my life and friends. And I don't feel as alone as I did before. And it has just really honestly changed my life and made me feel so much more positive and hopeful about my life in general. And it gives me something really happy to look forward to every day.
