Surviving Bullying – Preventing and Diffusing It for Children with Bleeding Disorders

When Lupe Torres’ college-age daughter told her story in front of a room full of 3,000 pharmaceutical executives, she got a standing ovation.

It was a story of triumph and hope—a story told after suffering from not just her severe bleeding disorder, but from the bullies who told her that her life had no value. And it was a story this young woman had the courage to tell key medical industry leaders thanks to her family’s involvement with Parents Empowering Parents (PEP).

Now a young woman, it had been several years since she’d been in middle school, and so helpless, so friendless that a suicide attempt had her confined to mental hospital. Far from a naturally depressive child, Lupe’s daughter had been driven to her depression by her former best friends, who turned on her when they learned of her diagnosis with Factor V Leiden Von Willibrand’s disease, a type one severe bleeding disorder. These “friends” convinced everyone she was contagious, and should be shunned until she was forced to leave school. At the time, it felt like the entire student body had turned their backs on her, Lupe said.

While the Torres family story is an example more extreme than most, bullying borne of ignorance and intolerance is something many children with bleeding disorders have to face. PEP helps families fight these tense situations by addressing it together.

But it’s not always an easy road. “There were a lot of incidents, and it was scary for her,” Lupe said. “She had so many medical things to deal with, and a fresh diagnosis. And here, the three girls who were her best friends in the world were telling her she was disgusting, and dirty, and she needed to kill herself. It was unbearable.”

Her daughter received her diagnosis when she was 13, shortly after she started menstruating. Her overly long periods were abnormal. Her doctors brushed off Lupe’s concerns at first, but after her daughter had a six-week long period, she finally got them to listen. By this point, her daughter was often covered in bruises from the slightest bump to her skin, and frequent, severe nosebleeds had her practically choking on her own blood,” Lupe said.

After years of dealing with doctors who didn’t understand them, the Torres family was referred to their local hemophilia center. Extensive testing revealed that both Lupe and her younger son had different types of bleeding disorders, though not quite as severe as her daughter’s case. Lupe, as it turned out, was the first person in her family to have a bleeding disorder, and she didn’t even know it until her daughter’s severe symptoms made their shared condition plain. No doctor had tagged the family’s bruising and long time to clot as anything out of the ordinary.

The hemophilia center helped them to grapple with both their diagnoses, and find the comprehensive treatment options the family needed most. She began working with PEP, and the parents there, who helped her understand the unique parenting challenges they would be facing.  And it helped, Lupe said.

Though the family banded together to face these new medical challenges, Lupe said she couldn’t have anticipated how the level of cruelty and intolerance in her school community would wear her daughter down.

“My daughter went to a magnet school—one that was hard to get into. She didn’t want to just give up. But every day, it got worse. My daughter was losing weight from the stress of it. She missed a lot of school anyway for medical reasons until we were able to get the right infusing schedule down. And then the bullying just made it so, so much worse.”

As a parent, Lupe said she didn’t take the full-on abuse her daughter suffered in stride. Lupe said she struggled mightily to advocate for her, both with the bullies’ parents, and with the school. “I couldn’t believe it. I knew these mothers. When I told them what was going on, they all said they didn’t want to get involved, and that kids would be kids and we should let them work it out. When I brought it to the school’s attention, they said they couldn’t do anything about it unless we could prove a physical attack occurred. School administrators actually had the nerve to suggest that my husband had abused her, and had caused all her bruises. When we showed them the things students were saying about her on social media, the principal said it hadn’t occurred on school property, so there was nothing they could do. I even tried going to the police, but they said they could do nothing unless a physical attack occurred, either. Didn’t they know that a physical fight could literally kill her?” Lupe said.

Her daughter’s suicide attempt brought an abrupt stop to the bullying, and her daughter, once recovered, returned to school. But there were never any consequences for the bullies, a fact that bothers Lupe to this day. Recently, one of her daughter’s bullies, now grown, apologized for her behavior. But there was only one.

Looking back on the experience, Lupe said strong family support and a united front helped her daughter pull through.

“I really believe that PEP and our contacts at the hemophilia center saved my daughter. It helped us present a united front as a family. And probably most important of all, the parenting classes helped us know what to expect, and how to be an advocate for our daughter.”

Lupe also said the program helped her meet other families and kids with bleeding disorders, which helped her gain some lifelong friendships she enjoys to this day.

Today, her daughter takes her bleeding disorder in stride. She’s studying at the University of Las Vegas to be a psychologist, so she can help other kids with serious medical conditions learn how to cope.

“Even though most of our problems happened in 2012 and 2013, a lot of progress has been made,” Lupe said. “Schools understand how serious bullying is now. There are more accommodations for kids with serious medical conditions. And parents, they can do more things, like take legal action, if they have to.”

Lupe recommends every family with bleeding disorders reach out to organizations like PEP, and their local hemophilia treatment centers. In fact, in a recent survey, more than 70 percent of all patient families who come through PEP said they would volunteer their time to work with other families.

“Educate, educate, educate. That’s all you can do. Keep telling your story. Keep showing them the facts about your diagnosis. Eventually, your child will find out who their real friends are, just like my children did. With the right love and support and advocacy, my daughter is thriving now, and it’s great to see.”

Comments are closed.