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I know I’m not the only one interested in medical research— especially the studies that pertain to my specific conditions— and you know that the best patient and/or advocate is an informed one. Staying up to date is no small feat, though, particularly when brain fog is a component of your illness.
Consider this page a shortcut in your quest to remain up to date on the latest related to lupus, and make sure to follow my Instagram, Twitter, or Facebook to see more comprehensive lists of what I’m currently reading.
As I’ve said before and will continue to say for the rest of eternity, clinical trials aren’t for everyone. How a person goes about caring for themselves post diagnosis is entirely and 100% Their Own Business And No One Else’s.
My belief is simply that the best patient and/or advocate is an informed one. I think the trickiest part is that staying up to date is no small feat, particularly when brain fog is a component of your illness, and this is precisely why I am excited to offer as many advocacy shortcuts for others in similar shoes as possible.
I already post about studies and research results with their respective implications. I love the idea of being some small part of furthering research, especially because it's hard to keep up with all that's going on when lupus is knockin' ya down. I can appreciate that others like me want to be involved in research and advocacy for a variety of reasons, but lack the access to do so because of their disease. That’s a real and often insurmountable hurtle.
My hope is endeavors like this one help fold the map and make the distance between You and You Feeling A Little Better that much shorter. Because while hope may be an entity in short supply for the chronically ill, it’s important we never completely lose the ability to dream.
Antidote connects patients with companies running clinical trials. Clinical trials may help to find new potential treatments for conditions like lupus.
Currently Enrolling: Biogen is seeking lupus patients with active CLE or SLE and skin involvement to test a monoclonal antibody that may help control symptoms and disease activity. Find out more here.
If you don’t qualify for the active trials listed above, but would like to see if there are other enrolling trials near you, Match can help you by scouring clinicaltrials.gov with your specific medical diagnoses and narrowing this search by your location.
Veteran lupies know they can trust the ALR as a resource for all things lupus, as this organization tirelessly endeavors to learn more about and ultimately cure SLE by supporting medical research. Check out their site here.
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