BY PAULA DERROW

Initially , doctors blamed allergies since her eyes were puffy and she had nasal congestion . But over the next few years , O ’ Connor ’ s symptoms grew more troubling . She began experiencing crushing fatigue , and she had difficulty chewing and swallowing .

O ’ Connor gets an infusion of medication while taking a walk in her neighbourhood .

“ I was an active middle schooler playing volleyball , singing in a choir and taking dance lessons , but I was so tired and weak that I couldn ’ t keep up ,” says O ’ Connor . Worse , some doctors suggested that her symptoms could be all in her head .

“ I think they thought I was a lazy , depressed teenager . Even I started to wonder if I was imagining things , but deep down , I knew I wasn ’ t ,” she said .

By 2005 , the summer before O ’ Connor entered eighth grade , her symptoms were impossible to brush off . “ My family and I were on vacation at the beach , but I was afraid to go into the ocean ,” she says . “ My facial muscles were so weak I couldn ’ t close my eyes or puff out my cheeks to hold my breath .”

When she began Googling her symptoms , what came up were two unfamiliar words — myasthenia gravis ( MG ) - attached to a scary description : a rare autoantibody disease that can cause the kind of widespread muscle weakness O ’ Connor had been experiencing . “ It was a surreal moment ,” she recalls . “ I saw phrases like ‘ rare disease ’ and ‘ no cure ’ and I thought , ‘ Could this really be it ?’

O ’ Connor shared her internet findings with her pediatrician , who suspected MG despite O ’ Connor ’ s young age ( MG can occur at any age , but onset of symptoms usually happens between the ages of 20 and 40 ).

O ’ Connor ’ s bloodwork confirmed her paediatrician ’ s suspicions : It showed high levels of antibodies attacking her muscles and interfering with their ability to contract . The news was upsetting - but also a relief . “ It was like entering a new world ,” says O ’ Connor . “ My parents and I were terrified about what might happen to me , but I also felt validated . For the first time , I was being heard and believed .”

Now , thanks to a variety of treatments , O ’ Connor ’ s symptoms may still sap her

O ’ Connor at age 12 , around the time of her diagnosis

energy , but they are largely under control . And while she has had to make sacrifices because of her fatigue , she hasn ’ t let that stop her from pursuing her dreams . Those dreams include getting married , earning a master ’ s degree in social work and building a career in patient advocacy .

“ As someone who has a disease without any visible symptoms , I know what it ’ s like to have people think you ’ re exaggerating ,” she says . “ I want to help prevent others from going through that .”

Patients like O ’ Connor are why the Janssen Pharmaceutical Companies of Johnson & Johnson are committed to doing ground-breaking research for possible new treatments for people with rare autoantibody diseases like MG . For Myasthenia Gravis Awareness Month , we share five things we now know about the disease , along with potential promising new breakthroughs on the horizon . 1 . Myasthenia gravis is rare , making it difficult to diagnose It took O ’ Connor two long years to get the right diagnosis , and that kind of delay isn ’ t unusual . It takes most patients at least a year , according to a 2020 study in Neurology . That ’ s partly because the condition is relatively uncommon , affecting 36,000 to 60,000 people in the US and 700,000 people worldwide .

“ The other issue that causes confusion is that muscle weakness - one of the hallmarks of the disease - can be a symptom of many other neurological conditions ,” says Hong Sun , M . D ., Ph . D ., Senior Director , Global Compound Development Team Leader , Neuroscience at Janssen Research & Development .