Hope for Soph

 

At age 22, Sophie’s life was on course. With a degree in Health Sciences and Public Health she was working a good job in healthcare recruitment and living in Charlotte North Carolina with her boyfriend Nick and their beloved labradoodle Winnie. Life was good and right on track. But on September 30th Sophie became very ill and was rushed to the hospital. With slurred speech, unrelenting headache, decreased consciousness, and loss of vision and memory, she was admitted to the Neurological Unit. Since this time Sophie has undergone an exhausting series of diagnostics including multiple spinal taps, MRI's, cat scans, electroencephalograms, and endless bloodwork.

 

For several days the test results were pointing to a diagnosis of Multiple Sclerosis. But symptoms worsened and Sophie was not responding to treatment. That’s when another test came back confirming a rare diagnosis, Myelin oligodendrocyte glycoprotein (MOG) autoimmune disease. MOG is a protein that is located in the central nervous system. MOG antibodies are found in patients who have repeated autoimmune attacks to their brain and spinal cord. Sophie has several lesions on her brain and spinal cord that fit the criteria for MOG syndrome. After finding out about the diagnosis Sophie and her family were devastated. At one point Sophie was trying to be strong and lighthearted, and commented “so it looks like Multiple Sclerosis has an evil cousin!” She is right.

 

After receiving high doses of IV steroids Sophie returned home only to be sent back for a relapse. Come to find out, steroids are only partially effective in MOG. Patients also need to go through very costly and ongoing plasma exchanges (plasmapheresis) and other IV infusions. These treatments require days of inpatient hospitalization. Needless to say, Sophie has serious deficits that are unresolved. Chronic fatigue, muscle weakness, poor cognition, and vision/memory loss are among the many challenges that Sophie deals with on a daily basis . 

 

Sophie's job is obviously on hold for now until she goes into remission and regains significant function. There will be many visits to specialists and even more hospital stays. Medical bills will be exorbitant and financial pressures could become deliterious to healing. The last bill for inpatient plasmapheresis came in at $90,000. Insurance adjustments will be negotiated with the hospital but it is unclear how some of these charges will become Sophie’s responsibility. There will be frequent co-pays for Occupational Therapy, Optometry and other disciplines. There could also be costly experimental therapies that may not be covered by Insurance; the list is endless and the costs for rare diseases like MOG can be staggering. Imagine being 22 and dealing with a complex neurologic disorder.

 

Sophie Duggan is resilient and tough minded. She wants to continue living independently, building a career, paying her rent, and finding a way forward with a new illness that she refers to as “Dobby”. If you’re familiar with Harry Potter, Dobby is the little house elf who is enslaved by dark forces until he’s finally freed. Sophie is doing everything that she can do to cope, trying to make sense of it all, and trying to keep her head up. 

 

Sophie has a mom, dad, sister, and boyfriend who love her deeply and are working tirelessly to support her. These are critical moments in her illness; Sophie will also  need the help of her friends and all those who want to help. It is hoped that her medical team will continue to uncover the most optimal treatment plan and that Sophie will feel more financially equipped to deal with this medical crisis, enabling her to focus all of her energy on healing. This condition is rare and not yet fully understood. This fund will go directly to Sophie Duggan and will be used for all medical expenses including co-insurance, experimental drugs, flights to other hospitals, and emergencies. Thank you for hearing Sophie's story, thank you for contributing to her progress, and thank you for joining Sophie in her ultimate quest to rid Dobby from the dark forces!

*Everyone's generosity is so appreciated and really elevating Sophie's spirits. Please join Team Soph and share this story to your timeline. Let's get to goal by expanding our reach! Thank you so much everyone!