James Befort Healing and Recovery
Donation protected
December 4, James devleoped a terribly painful rash over most of his body. Over the next several days, Megan shipped him in to local ERs to find out what was wrong. Even after spending several days at the Mayo Clinic in Jacksonville, the rash was spreading and becoming more painful, while no questions were being answered.
WARNING: graphic images with severe rash, please do not share.
Megan took him to Baptist Primary Care December 6th and had a doctor friend came to look at him. He immediately recommended going back to the hospital. James was feeling awful and had a 100º + fever. They ended up admitted to Mayo again.
James spent a couple more increasingly excruciating days at the Mayo while they searched for a cause. His entire body was on fire with pain. Finally after days of waiting and pain, they received the diagnosis - Stevens Johnson Syndrome. They ambulanced to the Shands Burn Unit, university of Gainesville, Florida. At Shands we learned it was NOT Steven Johnson Syndrome but actually Toxic Epidural Necrolysis (TENs). The difference between the two is SJS covers less than 30% of the body, TENs is greater than 30%. James has 100% body coverage.
ABOUT Toxic Epidural Necrolysis (TENs)
TENs is a rare, serious disorder of your skin and mucous membranes. It's usually a reaction to a medication or an infection. Often, it begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. Then the top layer of the affected skin dies, sheds and then heals.
Treatment focuses on eliminating the underlying cause, controlling symptoms and minimizing complications as your skin regrows.
Recovery after TENs can take weeks to months, depending on the severity of your condition. If it was caused by a medication, you'll need to permanently avoid that drug and others closely related to it.
Treatment is slow and painful at the Shands Burn ICU. His entire body will blister, pop and drain fluid to heal. He is on a lot of pain medication yet still suffering immensley. He cannot move on his own. The disease has spread into mucous membranes including his eyes. He has been battling a fever.
WARNING: graphic images with severe rash, please do not share.
Please note, no floral arrangemtns are allowed.
Thank you to those pictured and not pictured that spent time cheering James up!
Recovery time will no doubt last longer than 2-3 months considering the severity of his case, with at least one month total in the hospital.
This GoFundMe page is asking for support from all of James’ friends and family members that love him, not only through monetary donations but involvement and time.
The total out of pocket expense for the hospital according to James’ and Megan’s insurance will be around $5K. Megan has had to take several days and will have to take more off of work to participate in his recovery. She is currently out of PTO.
In other expenses, they have a reserved hotel room in Gainesville so that friends and family can stay for about $50.00 per night and support James. He needs a lot of attention and help. Megan is seeking to keep this hotel room reserved for it’s quality and price. James will have a loss of income until he is fully recovered, which could take months.
If you can’t give money, please send words of encouragement to James and Megan. The amount of pain involved in this disease rakes your spirit over the coals. James doesn’t usually give into depression and anxiety but with this amount of pain, he needs encouragement.
If you’d like to schedule a visit with James, it would involve wearing a gown and being in a sterile environment but nothing more. CAN NOT BE SICK! There are strict rules about visiting hours, noise and how much he can be moving around. Email, message or call Megan if interested.
WARNING: graphic images with severe rash, please do not share.
Megan took him to Baptist Primary Care December 6th and had a doctor friend came to look at him. He immediately recommended going back to the hospital. James was feeling awful and had a 100º + fever. They ended up admitted to Mayo again.
James spent a couple more increasingly excruciating days at the Mayo while they searched for a cause. His entire body was on fire with pain. Finally after days of waiting and pain, they received the diagnosis - Stevens Johnson Syndrome. They ambulanced to the Shands Burn Unit, university of Gainesville, Florida. At Shands we learned it was NOT Steven Johnson Syndrome but actually Toxic Epidural Necrolysis (TENs). The difference between the two is SJS covers less than 30% of the body, TENs is greater than 30%. James has 100% body coverage.
ABOUT Toxic Epidural Necrolysis (TENs)
TENs is a rare, serious disorder of your skin and mucous membranes. It's usually a reaction to a medication or an infection. Often, it begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. Then the top layer of the affected skin dies, sheds and then heals.
Treatment focuses on eliminating the underlying cause, controlling symptoms and minimizing complications as your skin regrows.
Recovery after TENs can take weeks to months, depending on the severity of your condition. If it was caused by a medication, you'll need to permanently avoid that drug and others closely related to it.
Treatment is slow and painful at the Shands Burn ICU. His entire body will blister, pop and drain fluid to heal. He is on a lot of pain medication yet still suffering immensley. He cannot move on his own. The disease has spread into mucous membranes including his eyes. He has been battling a fever.
WARNING: graphic images with severe rash, please do not share.
Please note, no floral arrangemtns are allowed.
Thank you to those pictured and not pictured that spent time cheering James up!
Recovery time will no doubt last longer than 2-3 months considering the severity of his case, with at least one month total in the hospital.
This GoFundMe page is asking for support from all of James’ friends and family members that love him, not only through monetary donations but involvement and time.
The total out of pocket expense for the hospital according to James’ and Megan’s insurance will be around $5K. Megan has had to take several days and will have to take more off of work to participate in his recovery. She is currently out of PTO.
In other expenses, they have a reserved hotel room in Gainesville so that friends and family can stay for about $50.00 per night and support James. He needs a lot of attention and help. Megan is seeking to keep this hotel room reserved for it’s quality and price. James will have a loss of income until he is fully recovered, which could take months.
If you can’t give money, please send words of encouragement to James and Megan. The amount of pain involved in this disease rakes your spirit over the coals. James doesn’t usually give into depression and anxiety but with this amount of pain, he needs encouragement.
If you’d like to schedule a visit with James, it would involve wearing a gown and being in a sterile environment but nothing more. CAN NOT BE SICK! There are strict rules about visiting hours, noise and how much he can be moving around. Email, message or call Megan if interested.
Organizer
Megan Befort
Organizer
Ponte Vedra Beach, FL
