Real Stories from People Living with VWD: Janine and Daniela

Throughout Janine’s younger life and into adulthood, large, colorful bruises, severe nose bleeds, and heavy menstrual cycles were her “normal.” Like so many others with an undiagnosed bleeding disorder, Janine and her family didn’t know or suspect that anything was wrong, nor did they know much about bleeding disorders. “I remember my mom would spend hours with me covered in blood, and the sheets of my bed would be red everywhere. My gums also would bleed very easily,” she explained. For Janine, this amount of bleeding was “ordinary.”

It wasn’t until Janine had her daughter, Daniela, that she was diagnosed with type 2M von Willebrand disease (VWD). Janine and her husband, Nemo, noticed that Daniela bruised easily, so they took her to the doctor. “She was covered in bruises just from holding her up. Thankfully, Daniela’s doctor didn’t think we were abusing her! [Her doctor] asked me if I have a bleeding disorder and I said, ‘No, I don’t think so.’” But when her doctor started naming the symptoms, Janine realized that she had experienced most of them her entire life. When Daniela was 6 months old, she was tested and diagnosed. Subsequently, Janine was diagnosed in 2014. After 42 years, she finally learned that her condition had a name!

Like Janine, Daniela has severe von Willebrand disease (type 1C) and Ehlers-Danlos syndrome (a painful connective tissue disorder). At first, her diagnosis was an upsetting and scary time for their family because Janine didn’t want Daniela to grow up with the same bleeding episodes that she had experienced growing up. Thankfully, Daniela was a naturally “careful” baby and didn’t have any major injuries when she was young. She just had lots of bruises on her hands and body from bumping into things during everyday activities and occasionally had nosebleeds.

Daniela has been an active voice in the bleeding disorders community since she was a young girl. When she was about 4 years old, Daniela was helping her parents make a cake and asked if she could give birthday cakes to “kids like her”—young people with chronic medical conditions. She raised her magic wand (the spatula) and made a wish to bake a smile on kids’ faces, and Janine and Nemo supported her wish. At first, they would deliver just a few cakes locally. As word started to spread, people would reach out to Daniela’s parents and ask for her cakes and their operation started to grow. They now have a non-profit organization called Daniela’s Little Wish, which is dedicated to delivering beautiful custom birthday cakes and cupcakes to young people with severe illnesses and disabilities. Their motto is “Baking smiles for kids since 2011.” Their deliveries now cover all of Connecticut and they are expanding into other states.

Daniela is also a motivational speaker, having given her first speech at a large fundraiser when she was 9 years old. Janine and Daniela have traveled to Pennsylvania, Ohio, Florida, Colorado, Texas, New York, and Connecticut to speak and host cupcake workshops for families in the bleeding disorder community. Nemo, Janine, and Daniela are involved with the National Hemophilia Foundation (NHF) and their local NHF chapter in Connecticut. Daniela has been awarded a Rare Impact Award from the National Organization for Rare Disorders, a Ryan White Youth Award from NHF, Values Award from St. Vincent’s Medical Center, and a Change the World award from Kids for Kids, Dancing for Life.

Though Daniela and Janine both have a positive outlook on having a bleeding disorder and try to live as normal of a life as possible, they have experienced some difficult challenges. Janine has tried several treatments, but they have had unpleasant side effects, have made her bleed more, or haven’t worked at all. She currently does not take any medication for her bleeding disorder, and sometimes gets severely anemic (when your body doesn’t have enough red blood cells) from her bleeds. This makes her very tired and unable to work, and she needs to get blood transfusions (replacing lost blood through an IV) and iron infusions (injecting iron into your body to increase red blood cells). Daniela has learned how to self-infuse (injects in her veins) her medicine, called clotting factor concentrate, and is passionate about teaching other children with bleeding disorders how to self-infuse as well. She infuses about 15 times per month and has been doing so since she was 9 years old. Nemo is a supportive father and husband who actively seeks to understand their disease, how it affects them, and speaks out in support of bleeding disorders any chance he has.

Janine’s advice as both a mother of a child with a bleeding disorder and a person with a bleeding disorder is to use all of the tools and resources available to help you. Though you may feel alone, there is a large community of people with bleeding disorders that are there to help, guide, and educate. She also recommends searching for a hematologist with whom you feel comfortable. “Don’t give up on doctors… if you feel a doctor [isn’t listening to your needs], you have a right to change doctors. Find what’s best for yourself and your son or daughter.”

CDC thanks Janine for sharing her and Daniela’s stories.