As many of you may know our friend Jennifer had a severe allergic reaction to an antibiotic in 2005. However what you may not know is that she is still suffering with the long term affects of her diagnosis 12 years later.
It was in May of 2005 when whe was perscribed an antibiotic because she wasn't feeling well. That simple decision would result in a day that would forever change her life. She was told to say goodbye to her 4 young children that she would have to leave behind in the care of friends in Fairbanks Alaska not knowing if she would be returning back to them. The medical staff in Alaska prepared her the best they could although they were unsure if she would even survive the battle that was ahead of her. She was then airlifted to the Burn Unit at Harborview Medical Center in Seattle Washington where she was placed in a medically induced coma and initally diagnosed with Stevens-Johnson Syndrome with a final diagnosis of the more severe variant of the disease Toxic Epidermal Necrolysis Syndrome (TENS). SJS/TENS is a disorder that causes painful blisters and leisons on the skin which are essentially 3rd degree burns that occour not only on the outside of the body but the inside as well. The treatment to remove her blistered skin was excruciating. Occular complications are also a result of the disease. In mild cases it can include irritation, light sensitivity and dry eye however in severe cases like Jennifers, it can lead to extensive tissue damage and scarring that can result in blindness. Jennifer survived 3 weeks of grueling treatment that involved removing the damaged skin that covered most of her body and multiple skin grafts to regenerate new skin growth. When she woke from her coma she entered a world of darkness because of the damage that was caused by the severity of the disease and how it scarred her eyes. With a long road of recovery before her, she left Seattle and went home to her children and she spent the next year going through the long and painful process of physical therapy 5 days a week to regain mobility in her limbs for the damage was not only external but internal as well. She needed to learn how to live a new life in her new skin. Slowly her eyesight did return, however the damage had been done. Treatment for her eyes and sight has been hard to find and comes at a great cost. To see the woman she is today is simply a miracle but the damage of the SJS/TENS is something she lives with every day and has for the last 12 years. Some of her struggles are eye irritation, light sensitivity and dry eye. She will develop abnormal fine lashes on the inside of her eyelids that rub against the cornea and then need to be removed. All of this and more. All of this causes permanent damage to her eyes and it is slowly stealing her sight and quality of life. A person who has bravely survived so much and gives so selflessly needs our help.
The Boston Eye Institue is one of the few places that specializes in the care and treatment of the eyes for people who have survived Stevens-Johnson Syndrome and TENS. After weeks of communication Jennifer has received the wonderful news that she is a candidate for the treatment in Boston. There will be an initial consultation with the Doctors and then they will move forward with the treatment. The appointment is scheduled for the 6th of November and will require her to spend 2 weeks in Boston Massachusets as she will have daily appointments. So many unknowns at this point but so much hope that this procedure will presereve her eyesight and protect her eyes from any further damage.
The timing of this trip is quickly approaching. We are asking for any help that you may possibly be able to give at this time. The cost of the procedure is approximately $5,000 per eye as well as the cost of transportation, food, lodging and incidentals.
Thank you for taking the time to read this. It has been a long journey for our friend and to know of her daily struggle after all of this time and after all that she has been through has been so hard to see. She finally has an opprotunity before her to see specialists that have knowledge and understanding of how destructive this disease can be. I hope we can all reach out and work together to help our friend who is always at the ready to be there for us.
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