Self Advocacy: A young timid girl to an outspoken woman

The story of Charlotte

When I was 11, I was diagnosed with Brown syndrome. Brown Syndrome is the common name for 4th nerve palsy, a rare disease impacting your eye(a). Back then, I shrugged it off. Around that same age, I started having multiple issues with my joints. I was underweight, behind in growing, experiencing excruciating pain, swelling, and bruises. Most of this was brushed off for years as growing pains or being from athletics. When I was 17, I began regressing. At 19, I found out I was HLA-B27 positive (an uncommon genetic marker), and had increased Sjrogens antibodies. Recently, at only age 20, after my own research, I have found out that there are correlations between Brown Syndrome, HLA-b27 positivity and early onsets of rheumatologic diseases. I emphasize this because I advocate more research so that all people can save years of potential pain. 11 year old me did not know how Brown Syndrome would push her to become a tenacious patient, friend, and advocate. We, as a society, need to teach everyone, especially young girls, to see the power of their voice. Not only that, we as a society must be willing to empathetically listen and believe patients. Simply because someone’s issues are unknown or rare does not minimize their pain.