As many of you may already know, my sister Jess has been fighting a lengthy battle with a rare disease called Guillain-Barre Syndrome (GBS). On January 15th, Jess started experiencing the initial symptoms of this rare disease, unusual tingling in her hands and feet that just wouldn't go away. Concern quickly came as she went days without relief and the tingling and lack of muscle coordination crept up her legs, so she made an appointment with her primary care physician to get some help. Jess's symptoms were immediately dismissed as simply dehydration and that she should get some rest and hydrate. The following day, Jess was unable to walk unsupported and my mom made the decision to take her to the emergency room. The staff immediately recognized the severity of the situation and Jess was admitted on Friday, January 16th. This was just the beginning of a long journey for Jess.
As the disease progressed, I would watch as my sister's health declined rapidly. Not only did GBS take away her ability to move, she also lost the ability talk, swallow and even breathe on her own. On January 25th, she was moved to the Intensive Care Unit where she spent over 13 days. During her time in the hospital, Jess was given a feeding tube and was placed on a ventilator. Thankfully, after several rounds of plasmapheresis, and the unending support from family and friends as well as the nurses, therapists, doctors at the hospital, Jess was strong enough to move on to her next step of recovery.
On February 7th, Jess was transferred to an inpatient rehabilitation program at another hospital where her journey continued. Progress initially came quickly and Jess was able to sit up on her own and even take a few steps with support. However, as quickly as it came, Jess experienced a relapse and her symptoms returned. Once again, the numbness crept its way up her body and Jess was unable to move or swallow for several days. In order to get her recovery back on track, the team decided to try an even longer round of plasmapheresis treatments to get things under control. Thankfully, Jess's health made a turn for the better and she started making progress again. Jess was officially released from the inpatient rehab facility today, March 8th. For the first time in nearly 2 months, she will be able to sleep in her own bed.
While "getting home" seemed to be the end of the journey, it is in fact just the beginning of another step in her recovery. Jess requires support to walk and will need extensive hours of rehabilitation in outpatient facilities for weeks to come. Her life with Guillain-Barre is just beginning and recovery will be long. This disease has put her life on hold and we're not sure when or if things will ever get back to normal. Thankfully, my mom was able to take leave from work to be by her side every step of the way. The hospital bills will soon begin to roll in and Jess will have to bear the financial burden of this disease. With your support, she wouldn't have to worry as much about how she will pay off her medical bills.
For more information on GBS, follow this link: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Guillain-Barr%C3%A9-Syndrome-Fact-Sheet