Cristina de la Riva, 23, has always been close to her younger brother, Jorge. In fact, she says they are best friends.
Jorge was diagnosed with severe hemophilia A at birth. His hemophilia immediately became a family affair. “When Jorge was diagnosed, our family was diagnosed,” Cristina says. “We became a team that was going to figure this out together.”
Although she was only 2 years old when Jorge was born, Cristina’s parents told her the truth as soon as she was able to understand it. The family got involved right away with the Lone Star Chapter of the National Hemophilia Foundation (NHF) in Houston.
“When I was little, all I remember of hemophilia was my brother crying because he had a shot, so I related to hemophilia very negatively,” Cristina says. “But later, as my mom became the director of the Lone Star Chapter, then I associated hemophilia with the community, going to bowl-a-thons, going to walks and doing fun stuff.”
“Jorge only lets a few people experience his hemophilia with him, so I think it’s made us closer,” she says. “That’s kind of a gift to the siblings in our community, something that is shared and can be a bonding experience within the family.”
For Cristina, being the unaffected sibling of someone with a bleeding disorder has been a positive experience overall. In fact, she appreciates the opportunities it has created, such as the chance to advocate and participate in NHF’s National Youth Leadership Institute (NYLI), a three-year leadership training program for young adults ages 18 to 24.
But this is not always the case, according to Jeanne Safer, PhD, a psychotherapist and author of The Normal One (Delta, 2003). The title, she says, came from the unaffected siblings in families of children with disabilities or other challenges who self-identify as “the normal one” in the family.
According to Safer, it’s important to let unaffected siblings talk about their frustrations and fears. “You can’t make somebody feel certain things. You have to allow them to feel what they feel,” she says. Parents should avoid telling unaffected siblings to “count your blessings” if they express negativity about their sibling’s condition. “That squelches normal responses,” says Safer.
Family members should avoid referring to the sibling with a bleeding disorder as having “special needs.” After all, Safer says, all children have special needs of some sort. Consistently treating the sibling with a bleeding disorder as special can make unaffected siblings feel that they’re not special or that their needs don’t count.
Hiding the facts about bleeding disorders from unaffected siblings will only breed fear and uncertainty.
Cristina’s parents let her be present for Jorge’s clotting factor infusions, so she could see exactly what was involved. “I was in on it,” she says. “Otherwise, it would have been this private thing between my father or mother and my brother. I would have felt left out. I would have seen hemophilia as an experience that was separate and foreign to my own.”
What’s more, Cristina’s parents were candid with her about her risk of being a carrier of hemophilia, especially because her mother is a symptomatic carrier. Cristina was tested at age 19 and is not a carrier.
Let them shine
Safer points out that not all siblings will be naturally close. In fact, some aren’t comfortable being part of their brother’s or sister’s care. She urges parents not to force camaraderie in these relationships. She also suggests spending some one-on-one time with unaffected siblings.
“Let them be the center of attention regularly,” Safer says. “And let them have their own friends, activities and moments to shine.”
“Your family bleeding disorder doesn’t have to be something negative in your life. In our family, we became closer because of our bleeding disorder,” says Cristina.