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A breakthrough
A while ago I posted about research testing and how it has helped us find out my Mitochondrial Disease is likely linked to a defective NFS1 gene. Well I got a call today from my absolute favorite person in the research department. She has been with me since the beginning of my journey. She informed me that because of the testing they did on me they are beginning to find other people throughout the country that may have the same (extremely rare) type of Mitochondrial disease as me. AND they are trying to get approved to write an article about us. Hopefully this will eventually lead to a real diagnosis, since many doctors and people dismiss research diagnosis’s until they a properly approved. Maybe even years down the road we could find better treatment.
I just had to share this with everyone, it was a really proud moment for me. My persistence has paid off, I am helping others get the answers they deserve simply by not giving up until I got my answer. If and when this article does get published I will make sure to post a link, it may take a few months though, as we all know...anything medical takes forever 😂.
#MitochondrialDisease #NFS1gene #Mito #MedicalResearch #RareDiseases #ChronicIllness #CheerMeOn #InvisibleIllness #LacticAcidosis
