For Patients

A Life Changer

Patient: Tiffany Niedbalski
Diagnosis: Stevens Johnson syndrome
Sight Restored: 2014

PROSE patient and SJS survivor Tiffany

In February 2005, Tiffany Niedbalski was a junior in high school. She had a normal life – she went to class, spent time with family and friends, and was starting to plan for the next phase of her life.

But then life threw her a curve ball. Tiffany took a common medication and developed toxic epidermal necrolysis (TENS), the most severe form of Stevens Johnson syndrome (SJS). Her first symptom appeared on a Monday; she awoke with a large, painful blister on the roof of her mouth. When rashes began to appear all over her body, Tiffany’s father rushed her to the hospital.

SJS is a very rare disease.  Many physicians have no experience with it; consequently, patients are not always properly initially diagnosed. Tiffany was lucky – the E.R doctor immediately suspected SJS.

SJS symptoms manifest as blisters, which are essentially second and third degree burns. As her reaction progressed, Tiffany, now with 70% of her body covered in open blisters, was taken by ambulance to a nearby burn unit. She remained there for three weeks, fighting for her life (about 30% of those stricken with TENS die).

Her long recovery process was hampered by the damage to her eyes. SJS destroyed her tear ducts, causing severe ocular dryness; and when the burn blisters on the insides of her eyelids healed, they left scars that ravaged her delicate corneas with each blink. Surgery saved her from going blind, and amniotic membrane transplants slowed the progression of her eye disease, but her eye health continued to worsen year after year.

Nine years after her TENS diagnosis, Tiffany was a happily married mother of two, but she lived with the fear that she would lose her vision permanently. “I had been told for the past three years that my vision could go at any time,” said Tiffany. She was legally blind - unable to drive, or work, or participate in her daughter’s extracurricular activities – and could only see about five feet in front of her.

A visit to a new ophthalmologist led Tiffany to Boston Foundation for Sight (BFS) and BostonSight® PROSE treatment. “My husband’s health insurance paid for it, but it took a lot of persistence to get it approved. I was declined three times.” Finally, Tiffany arrived at BFS in December 2014.

“The staff at BFS were just amazing. From the moment that we spoke on the phone with Gillian, we felt nothing but positive energy and love from everyone we encountered. The billing staff worked hard to get insurance to cover the treatment. And Dr. Kwok is awesome. He is so nice and such a genuine person. He was very gentle.”

Tiffany returned home just before Christmas, with improved vision and ready to re-engage in her life. “Now that I have a driver’s license again, I can take my daughter to pre-school. I can go back to work soon. Even just driving to the store to get milk seems amazing to me.”

Determined to help others learn about PROSE treatment, Tiffany has become active in the online SJS community. “PROSE has been a huge life-changer for me, and I want to make sure that everyone with SJS knows about it. No one should have to suffer like I did when such a great solution is available.”

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