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May. 27, 2022

TOPIC: Patient Stories

Raymond’s Journey to a New Normal

Posted by Julie Ostroff

Imagine being a healthy 30-year-old waking up one day to find yourself stumbling, fatigued, tripping and unable to walk. Following two trips to the emergency room, you are told to return home, drink plenty of fluids and within a few days the symptoms will subside. Days later, you find yourself still experiencing an ongoing severity of symptoms, now crawling on the floor to reach the phone for help because you can’t hold yourself up. I did not have to imagine that scenario, because that’s what happened to me.

After all of that, I was taken back to the hospital where, following a spinal tap, I was diagnosed with Guillain Barre syndrome. After 10 long, agonizing months of hospitalization, including two bouts of pneumonia while on a respirator and intense rehabilitation, I was discharged in a wheelchair to continue outpatient rehab.

My journey with Guillain-Barré syndrome took five years to return to a new normal. I was faced with challenges of lost income, continued ongoing care and treatment, and the uncertainty of how to adapt. These are just some of the unique obstacles that patients and families face when presented with these life-changing neurological conditions.

Being confronted with a rare disease like Guillain-Barré Syndrome not only affects the person going through the disease, but it affects the families and caregivers. I want to pass along the message to enjoy the moment, because one does not know what tomorrow may bring. I also want to continue to help support and educate my community about who we are as a rare community and that we are functioning members of society.