Tech student asks for help raising awareness for sister’s disorder - The Daily Toreador: Lavida

Tech student asks for help raising awareness for sister’s disorder

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Posted: Thursday, January 31, 2013 1:11 am

Claudia Tristán is asking for help.

This senior journalism and business marketing major from Austin is not only a full-time student, but also a big sister — a concerned one.

Tristán’s 15-year-old sister, Alejandra Tristán, has Ehlers-Danlos syndrome, an inherited group of disorders that cause extremely loose joints.

Since age 6, Alejandra Tristán has experienced joints dislocation continuously, her shoulder dislocating almost daily.

“Basically, she could be walking, and at any moment her knee will pop out, so she will have to put it back in,” Claudia Tristán said, “but you can imagine how painful that is.”

On Jan. 24, Claudia Tristán discovered a White House petition that will create awareness of EDS and recognition of the disease as a disability so those affected can receive adequate treatment and care. This is only if it reaches 25,000 signatures.

Claudia Tristán created a public Facebook event the next morning entitled “Raise Awareness of Ehlers-Danlos Syndrome,” and is urging family, friends and anyone willing to help improve her sister’s health. By press deadline, the petition had 1,331 signatures.

“I guess we all have siblings,” Claudia Tristán said, wiping her tears. “None of us as an older sibling want to see our younger siblings suffering.”

Alejandra Tristán wears knee braces at all times and also wrist and elbow braces to secure her joints.

“She has popped her knee out almost every year since she was 6,” Claudia Tristán said. “No one knew what it was.”

After spending two months in a Houston hospital last summer, Alejandra Tristán finally received her EDS diagnosis.

“Doctors want to assume it is a general disease and forget about EDS,” Claudia Tristán said. “There is very little awareness of it, but a lot of people have it. The problem is doctors keep misdiagnosing it.”

While some days Alejandra Tristán can walk, other days she is in a wheelchair.

“It’s kind of a rollercoaster,” Claudia Tristán said. “But, overall, it’s getting worse.”

At one point during winter break last year, Alejandra Tristán began dancing with Claudia Tristán. Her joyful movements did not last long, though. The following week, Alejandra Tristá dislocated her back.

“Her muscles were the only thing that were holding her spine together,” Claudia Tristán said. “She was in bed for about a week.”

During Claudia Tristán’s last week of winter break, her sister hurt her back again, and has moved very little since.

“She’s been in bed since I left home,” Claudia Tristán said. “It’s been about four weeks now.”

The reason Claudia Tristán said the petition is so vital is so that her sister, and others affected by EDS, can receive financial aid.

“Therapy and medical bills are very expensive,” she said. “She has to have a physical therapist come to our house twice a week to put her body back together. One of her doctor appointments can cost $400.”

The medical bills also have affected Claudia Tristán’s college expenses.

“My parents haven’t been able to support me in college anymore, which is completely understandable,” she said. “It’s my little sister’s health. It’s a big deal.”

Claudia Tristán said her sister, a freshman in high school, plans to continue a family tradition by attending Texas Tech after graduating.

Claudia Tristán urges students, faculty and staff at Tech to consider helping her sister achieve this goal by signing the petition, found on her Facebook event’s wall.

“My family has been here at Tech since 2003,” Claudia Tristán said. “We know Tech has big support, and we just hope they’re willing to support us with this cause.”

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Welcome to the discussion.

1 comment:

  • marvinvinn posted at 6:43 am on Thu, May 29, 2014.

    marvinvinn Posts: 51

    I know how you feel, I hope that you will help your sister to get better. I helped my brother to improve his health and I feel so good. He developed an eye condition and I went with him at Optical Outlets to see exactly what was the problem. The doctor advised him to wear glasses for a while and to follow a painless treatment.

     

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