Living life as a vibrant 14-year old teen is the epitome of life. Football games, birthday parties, hanging out with friends. It’s that age when you are on the brink of maturing into an adult, but yet, you can still be a kid.
Ayiana Gallaspy of Kountze has been blessed with a life of faith, and at 14 years of age, she can pretty much take care of herself through her strong faith.
Growing up in a rural area and taking on the responsibilities of being a growing teen are what she enjoys, whether it be athletics or cheerleading.
But recently, her life took a dramatic turn. A curve-ball of sorts that will affect the rest of her life.
Ayiana was recently diagnosed with Ehlers Danlos Syndrome, a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls.
The toughest road was leading up to her diagnosis, which has been a struggle because of the constant pain she endures each day.
For a year, Ayiana has lived with pain in her joints and back, that has slowly increased in time – to a point where she can do nothing but cry and try to catch her breath.
“We have taken her to the best hospitals and the best doctors, and we could never get a straight answer from anyone,” Ayiana’s mother Shy Seaman said. “It seems like we were leaving the hospitals with more questions than what we thought going in with.”
Ayiana has been active as a cheerleader for years, having excelled as an acrobatic tumbler with extra limber limbs and appendages.
No one ever questioned her abilities to have that extra limber body that allowed her to bend easily. Plus her vertical leap being extra ordinary to her cheerleading counterparts was always thought of as a gift handed to her.
But recently, she began to complain of pain in her knees, and in her elbows, which she felt was just soreness, or growing pains.
It was nothing that over-the-counter pain killers or anti-inflammatory pills could fix – so thought her mother, Shy.
Her pain progressed and became excruciating at times to the point where she couldn’t catch her breath.
“She was living this way for a long time,” Shy said. “She is such a strong person and always has a smile on her face. She has such a high threshold for pain and she is one to not want to draw attention to herself in any way.”
School mates and other family members were not aware of the pain Ayiana was enduring on a daily basis. She was always cracking a smile and helping others. To everyone else, she was the happiest teen.
In November 2012, Shy and her husband took Ayiana to Texas Children’s Hospital in Houston.
After tests, she was ordered to take physical therapy but she had not suffered a physical injury.
Doctors then prescribed anti-inflammatory pills and pain meds to help subside her agony while going through months of tests.
In February, when most of her joints in her body were in severe pain, doctors sent her to rheumatology, where she would be tested for juvenile arthritis, lupus or other auto-immune diseases. All her tests would come back negative.
It wasn’t until Shy had remembered about a friend that had mention Ehlers to her because of her daughter having the syndrome.
“I had just blown her off initially,” Shy said. “I have a special ed degree and knew kids with Ehlers, but they suffered from some deformities, and Ayiana wasn’t experiencing that in her body.”
Frustration set in because there were no answers, but more questions. Ayiana’s pain progressed and became worse each day.
Disorders like fibromyalgia were also being tested on Ayiana, and she would soon be taking as many as six Lyrica pain pills a day. Nothing was helping.
In her search for answers, Shy took the internet and began researching on her own, always making sure that Lupus, arthritis and fibromyalgia were all mis-diagnosed. And in her answers, Ehlers Danlos kept appearing.
Shy went back to her conversation with her friend and realized that this may be the answer. And while most of the doctors Ayiana had seen said she was suffering from some type of hypermobility, in Shy’s search on the internet, she found one type of Ehlers to be hypermobile.
In her quest to find the answers with Ehlers, Shy found out that the syndrome is passed genetically through the maternal side. And in her research, she began to realize that she was suffering from some forms of the internal symptoms of Ehlers.
“The heart, kidney’s and other internal problems, I had been experiencing,” she said. “I never really had joint pain other than in my back, but I just assumed it was my scoliosis when I was a teen.”
In July, Ayiana’s pain became so excruciating that eating became a problem. She had gone five days with trouble eating due to pain in her chest from swallowing.
Shy practically demanded answers and needed her to go to a genetics specialists to diagnose her with Ehlers. She would not be able to get an appointment until December 2013.
In her research, she found a specialist in Austin that treats Ehlers, and Shy made the phone call.
They met with the specialists and they soon realized that he was informing them of what was happening without asking questions. Shy said, she found out that this specialist and his nurses also suffered from Ehlers.
Ehlers Danlos attacks the collagen in the body causing pain in the joints, which was what Ayiana had been suffering. What they didn’t know was that the pain meds and anti-inflammatory pills were doing were breaking down her collagen more, causing her pain to reach excruciating levels.
The specialist uses prolotherapy or regenerative injection therapy to trick the brain into forming collagen.
“That was the first doctor’s appointment that we walked out of that we weren’t frustrated,” Shy said. “We felt understood and felt like we had the answers.”
For Ayiana, it is a relief but not a longterm relief. She will need more treatments that involve as many as seven injections in each area of pain.
Because Ayiana is a co-head cheerleader at Kountze Middle School, the district has developed programs for her to continue to participate as well as athletics to help her maintain a normal life.
“Every couple of months I would get so frustrated,” Shy said in her emotional tears. “I would apologize to her because I felt as if I was failing her. She would always answer me and tell me that God is going to take care of this.”
Ayiana’s faith in God has been instrumental in her battle with Ehlers Danlos. She continually tells everyone, including her doctor, that she is not scared.
Because Ayiana has had to deal with a lot of the turmoil created after the Kountze cheerleader case involving scriptures on banners, she believes she is going through a spiritual battle, now that she has this syndrome.
“God will take care of me,” she said by phone interview. “My family and faith will get me through this.”
Ayiana is an inspiration to all of us who are living with chronic pain. She has a special way to think and deal with her pain.
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