Emily, 31, California
Emily is a 31-year-old occupational therapist who focuses on helping other people with disabilities gaining independence living skills. Emily herself is living with a rare condition called Ehlers-Danlos syndrome that has a major effect on her life. Because of EDS, Emily has had strokes, spinal cord injuries and developed adrenal insufficiency, all of which contribute to being at high-risk of COVID-19.
In her video, Emily speaks about access to healthcare and medication during the pandemic.
COVID-19 Video Transcript
Healthcare access
One of the big worries I have is access to healthcare because that’s very, very important to me. Twice in the past two years, I have needed emergency medical help to stabilize me when I had an adrenal crisis. And if I hadn’t gotten that emergency help, I very likely could have died. So going forward, I worry that if I am in that situation again, I won’t have access to the healthcare I need because healthcare will be overwhelmed.
Access to medication
I also worry about the supply chain of medication. I take a lot of medication to keep me stable, and I take one medication that is vital for me to stay alive. It’s kind of a situation like with people who have type I diabetes where they need the insulin. I have a medication like that that I am completely relying on. So I am very concerned about the medication supply chain and continuing to have access to that vital medication.
Coping with COVID
I do feel frustrated sometimes about the isolation. I definitely am worried sometimes, and what I try to do is to give myself time and permission to feel those things because it is important to feel those things. It’s a very real thing we are facing. But then the rest of the time in daily life, try and focus on the moment, don’t think so much about the future or big picture things, and just try and ask what can make me happy and healthy and comfortable in the moment.
