At first glance Tiffany Rivera is a beautiful young lady, who happens to be a model and a beauty queen at only 14 years old. Who would guess that behind her tiara and that stunning smile is a typical teenager who also happens to be dealing with a rare disease known as Klippel-Feil syndrome.
The disease is characterized by the abnormal fusion of two or more bones of the vertebrae within the neck. This congenital disease can sometimes be indicated by an abnormally short neck, restricted movement and a low hairline at the back of the head. However, as in Tiffany’s case, sometimes there are no signs until symptoms worsen or they first become apparent.
Tiffany was an active athlete for most of her childhood, without a care in the world, until one fateful day. While at school, she was struck in the head by a basketball and soon after began experiencing migraines, back spasms and neck stiffness daily. The accident seemed to trigger her symptoms and this led to many misdiagnoses, which only exasperated her condition further.
Since January 4, 2012 she was not able to dance or even swim. In the early days since the incident, she was unaware of her condition as it was so rare that even doctors could not seem to figure it out. At another facility she was told she would never swim or dance, dancing being one of her favorite pastimes.
“At first it was so frustrating because the pain was unbearable and most orthopaedists didn't understand why I was in so much pain. They asked me to become intolerant to the pain,” Tiffany said. Tiffany and her family did not stop fighting for answers and a solution to relieve that excruciating pain.
Finally, Dr. John Asghar at Nicklaus Children's Hospital, formerly Miami Children's Hospital, was able to provide some answers and appropriately diagnosed her condition. Early diagnosis is crucial to a promising long-term prognosis and an improved quality of life.
“The Department of Orthopedics at Nicklaus Children's Hospital, immediately diagnosed me and began to work on solutions. Dr. John Asghar was amazing,” Tiffany said.
“He [Dr. Asghar] met her in the CT scan room and casually introduced himself and as he wheeled her back to her room he said the most amazing thing, ‘I reviewed your X-rays, and CT scans and realized I know what you have. Let me tell you where it hurts and you tell me if I am right.’ We watched in awe as he pinpointed exactly where her pain was and her symptoms. It was an amazing moment to watch my child’s face light up and once again she cried, but out of relief that finally someone understood her pain and her condition. From that moment on, we knew we were in the right place, with the right doctor,” Lourdes Rivera, Tiffany’s mother said.
After pain treatment and surgery which relieved her pain and neck stiffness, she is now able to swim, participate in pageants, model and even dance.
“Usually, Klippel-Feil syndrome alone does not necessitate surgery. In Tiffany’s particular case, the abnormal development and fusions were concentrated in her upper cervical spine. This lead to increased forces being seen across an inherently abnormal joint between the first and second cervical vertebrate in the upper cervical spine,” Dr. Asghar said. Due to the increased instability which caused her pain, there was potential neurologic risk, he said. The fusion operation was done to stabilize her bones, treat her severe recurrent pain and significantly lessen her neurologic risk.
Tiffany has come a long way since those painful days. In addition to her current title of Miss Hallandale Beach Teen USA, she currently advocates for concussion awareness within school athletic programs and she supports the organization Daniel’s Dash which advocates for concussion awareness as well. Most importantly, she has also created her own foundation entitled Embrace Me, which serves as a support group for children and teens with spinal disorders and disabilities. The foundation’s motto is “strengthen me, respect me, love me.” Next on her life’s itinerary, she is vying for the title of Miss Florida Teen USA 2014.