SELMA – When you first meet Selma’s Aubrey Tuttrup it’s hard to tell she’s dealing with three debilitating disorders. The upbeat 18-year-old is a college student who graduated high school early, has numerous career goals and is getting ready to sing in a solo concert.

She’ll be performing eight songs at the “Singing for Dysautonomia” concert and will be joined by friends and family during the performance. The concert starts at 7 p.m. on Saturday, Oct. 5, at the First Christian Church of Selma, 2026 Arrants St.

Listening to Aubrey talk about her previous dancing and academic achievements and realizing that now she uses a walker or a wheelchair to get around or may even need to lie down on the floor to keep from fainting, you quickly realize something drastic has changed.

“Eighth grade is when I started getting sick. I started getting migraines so I was on home hospital,” she said of when her health rapidly declined.

Aubrey attended Selma’s Wilson Elementary and recalls even then she would feel as if she were about to faint. She recalls playing on the school’s monkey bars and jumping up to grab them, but then needing to let go.

“I could feel my shoulders being pulled from my sockets. I didn’t realize that wasn’t normal. I thought that happened to everyone. I also remember being dizzy when I stood up. I thought that was normal.

So I think I’ve been sick my whole life, but when I was younger my symptoms were much milder, so I was still able to function. I did sports at my elementary school and took five dance classes a week.”

The migraines that started in seventh grade only increased in severity by eighth grade. She was only able to attend Abraham Lincoln Middle School for seventh grade when she also started having anxiety issues.

“We later found out that with dysautonomia, that the flight or fight [instinct] is part of the autonomic nervous system. So a lot of people with dysautonomia have panic attacks. The autonomic nervous system triggers that fight or flight randomly.”

She was given medicine for migraines, but it seemed to only make the headaches worse.

“I had really, really bad fatigue,” she said.

Later, Aubrey would attempt to attend Selma High for her freshmen and sophomore years but then transferred to Kingsburg Independent Study School because of her health.

Aubrey is the daughter of Rick and Kennette Tuttrup and her older sister, Tannisse Tuttrup lives in Fresno as she’s working on her special education teaching credential.

“At one point, she was sleeping for 14 hours a day and still exhausted all the time,” Kennette Tuttrup said. “The doctors just didn’t take it seriously. They’d say, she just needs to get up and go to school.”

Since her parents are both educators, they were dismayed to have school officials make them feel guilty about Aubrey’s attendance.

“I’m an elementary school teacher and my husband teaches at Fresno City. We’re pro-education. We know what it takes to get an education. Our older daughter graduated seventh in her class at Selma High School. We’re the same parents, yet they were saying we were bad parents.”

Aubrey danced for 12 years at The Dancing School of Selma and recalls her last year of dance in sixth grade. Losing contact with most of her friends only added to sense of loss.

“I felt my world absolutely falling apart. I felt like so many things and people that were familiar to me were lost.”

She was diagnosed with dysautonomia and with Ehlers-Danlos Syndrome (EDS) by Dr. Timothy Foster, a pediatric neurologist at Clovis Community Medical Center. He’s also a University of California San Francisco assistant clinical professor in the UCSF Fresno Department of Pediatrics, Division of Child Neurology.

Knowing what she had was a huge relief. She was 17 at the time and admits she was emotionally drained and mad that her body wouldn’t “snap out of it. I felt ready to give up. I didn’t tell anyone this, but I was thinking in my head, if I couldn’t figure something out that day, I just wanted to give up. I had so many people judging me. To me, the social stigma of having an invisible disability and an invisible illness is sometimes worse than having the illness itself.”

Aubrey said the EDS may be causing the dysautonomia, as there can be many different causes for the disorder.

“It’s common for people to develop dysautonomia after getting sick with a bad virus. So a lot of people get a bad virus and then they just never get better after that. It develops into dysautonomia. But for me, EDS is a genetic connective tissue disorder. So that means I’ve always had it and always will have it.”

Since walking circulates the blood, standing still is more of challenge for Aubrey.

“There’s nothing to keep the blood from just falling to my legs,” she said and last year she would pass out almost every time she stood up. “I had to literally crawl from my bed to the bathroom because I couldn’t walk.”

Since she’ll always have EDS, Aubrey is in physical therapy now to strengthen her muscles and prevent dislocations of her joints that happen daily.

“It can be any part of my body, but the parts of my body that I have the most frequent dislocations are my shoulders and my knees. Not just the knee cap, but my knee. It has been helping. I feel a lot more sturdy when I walk. I don’t feel quite like I’m going to fall apart as much when I stand.”

Ehlers-Danlos Syndrome affects connective tissue throughout the body and has affected Aubrey’s muscles. Thus, she’s also dealing with postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia. POTS is a condition in which a change from lying to standing causes an abnormally large increase in heart rate.

She also has mast cell activation syndrome (MCAS) where she experiences repeated episodes of the symptoms of anaphylaxis. Mast cells are immune system cells that live in the bone marrow and in body tissues, internal and external, such as the gastrointestinal tract, the lining of the airway and the skin.

Dysautonomia International estimates between 1 million to 3 million Americans and 70 million people around the world have dysautonomia.

The Tuttrups say they’ve had to help educate doctors about Aubrey’s conditions and say blood tests alone will not identify these disorders.

“If you’re a cardiologist, you study the heart. If you’re a GI doctor, you study the GI (gastrointestinal) tract. But they don’t study what controls those things, which is the autonomic nervous system,” Kennette Tuttrup said.

“The most common reaction I get when I see a doctor that I haven’t seen before and I tell them I have Ehlers-Danlos Syndrome and dysautonomia, they say ‘what is that?’ and ‘how do they spell that?’ They’ve never heard of it and ask me how to spell it,” Aubrey said.

She explains that dysautonomia affects literally every system of the body that normally would happen automatically: your heart rate, blood pressure, temperature regulation, digestion, sweating and flight or fight reactions.

“Even things like your veins contracting when you stand up, that’s all controlled by the autonomic nervous system. In people with dysautonomia, it’s not reliable.”

So in an effort to raise awareness, Aubrey is reaching out with the “Singing for Dysautonomia” to help educate the public, her teachers, her classmates and congregation members.

“I’m nervous about being the voice of a community that does not have a voice. That’s a really big responsibility, but it’s also a really big honor to be able to do that,” she said. “Bottom line, I just want to help other people get the medical treatment that they need. At one point, I was one of those people who couldn’t get treatment because my doctors weren’t educated. If I can just help just one person get a diagnosis, then I’ve done my job.”

It takes years to actually be diagnosed and often patients are at first told their problem is psychiatric, Kennette Tuttrup said.

“The first thing doctors do when they want to find a diagnosis for someone is they do blood tests. But POTS, Ehlers-Danlos Syndrome and dysautonomia cannot be detected by a blood test. You can’t do a blood test on the autonomic system,” Aubrey said.

She hopes that one day people and doctors are so knowledgeable about the conditions that they’re able to get the health care they need sooner than later.

“I know I can’t go around to every doctor in the world and tell them about it, but what I can do is, I can do my little part. My dream is that one day, people will know about it.”

Aubrey has also been diagnosed with Asperger’s Syndrome, part of a broader category called autism spectrum disorder.

“It’s really an internal thing. I perceive and interact with the world a lot differently than neurotypical people do.”

She’s typical of most girls with Asperger’s as she’s learned to mask the signs in order to function socially. She however, attributes many of her positive attributes to what some would consider a disorder.

“I’ve always known I was different, but I didn’t know what it was. I thought I was broken and I thought that’s why I was different. And people didn’t always accept me. When I found out the signs of Asperger’s in girls, it like my whole world view opened up. I literally started crying when I figured it out. I realized I’m not broken, I’m just wired differently. And that’s not a bad thing. We need diversity in thinking.”

Kennette says that as a teacher she thinks school health officials and administrators need to be educated about all these disorders since it’s estimated one in 100 teenagers has some form of POTS.

“Just because [a teen] looks normal doesn’t mean everything is okay with them. Yet, the doctors don’t know, so how do we expect educators, who deal with [teens] every day, to know and school nurses? We need to get the word out to those people.”

Since Aubrey has been ill since she was 13, Kennette said it’s been difficult seeing her daughter miss out on the activities teens typically get to enjoy when they’re in the prime of life.

“Watching your child go through this, and yet you still have to go to work because you have responsibilities, and then people are telling you you’re a bad parent? Yeah, it’s a nightmare. She lost friends and her teen years when a lot of things are supposed to happen. She didn’t get all those things.”

But what she does get now are the occasional outings with her boyfriend John Gaytan. They went canoeing recently at Morro Bay, but it took days to recuperate even though he did most of the rowing.

“I am getting stronger. My medication is helping and physical therapy and changes to my diet I’ve made are helping. I’m slowly getting stronger and am able to walk more without passing out. It’s only once every two or three weeks now and it used to be 10 to 15 times a day. It’s a huge improvement.

I try not to get too discouraged if I do pass out. That doesn’t take away the progress I’ve made and I know I can still have a joyful life being disabled.”

She’s taking one class at a time and is thinking of majoring in psychology or perhaps communications or even neuropsychology, or of becoming an occupational therapist.

A more lightweight wheelchair has been approved by their insurance that will make it easier for Aubrey to get around. She’s even thinking of how she can combine her love of dance with her new mode of transportation.

“I danced for 12 years and I still don’t know if I’d be able to wheelchair dance because of my shoulders. They may pop out, but if I get my shoulders stronger, I think it would be fun. My physical therapist said you can take the girl out of the dance, but you can’t take dancer out of the girl. I’m still a dancer even if I can’t do it. I think that’s something I want people to know. People who used to be able-bodied and become disabled, we’re the same person we were before. We just have more limitations physically, but that doesn’t mean we have limitations as people. I’m the same exact person I was before I had a disability. I think it’s made me a better person, too.”

For the Oct. 5 concert, one of the songs Aubrey will sing is titled “Blessings” by Laura Story. Her father and jazz musician Rick Tuttrup will accompany her.

“It’s a song that my dad really loves and that’s part of it. [The song] talks about how we ask for blessings and prosperity and for health and peace. But sometimes, blessings can come through hardships. They don’t seem like blessings at the time. There’s a line, ‘What if trials of this life are your mercies in disguise?’ I’ve learned so much about life through these hardships I’ve been through. I wouldn’t change any of it. It’s taught me to appreciate the little things. The little things are not that little, if you think about it.”

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The reporter can be reached at 583-2427 or lbrown@selmaenterprise.com.

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