For Bella Marin and her mom, Frances, Bella’s VEDS journey is a road traveled hand-in-hand.
“I really don’t think I would have made it this far if it wasn’t for her,” Bella says of her mom. “She’s really my biggest rock, honestly.”
Today Bella, a person living with “first generation” VEDS, resides in Houston and Frances in El Paso. But Bella says her mom is always “just on the next flight over” when she needs help, and that her mom’s emotional, physical and mental support has been essential.
“She literally dedicated her life and time and energy to making sure that we have all the info, and that I’m getting all the care I need to prolong my life,” Bella said. “No matter what it was, she was like, as long as you’re happy and living your life, that’s okay with me.”
Bella’s VEDS diagnosis started with her mom’s intuition. Frances noticed that Bella bruised easily and that her veins were unusually visible, signs she hadn’t seen in Bella’s two older siblings. Her pediatrician dismissed the concerns at first. Blood work eventually led to a diagnosis of von Willebrand disease, a bleeding condition, when Bella was 5.
Frances still suspected something else.
When Bella was 10, a fall at the park on Easter split her knee open and sent her to the emergency room for stitches. The same type of fall would have simply resulted in a scrape knee for most young people; for Bella such “routine” injuries became serious fast. “I was feeling all of the stitches, and they were saying that I was being dramatic and that I’m just being a kid,” Bella recalled. Frances raised her concerns with Bella’s hematologist, who ordered a skin biopsy. In January 2004, the results confirmed vascular Ehlers-Danlos syndrome (VEDS).
Frances is honest about how hard those first months were. “I’m not going to lie, when I first learned about it, I was really down,” she said. About four months later, she attended a conference in Buffalo, New York, and met other people living with VEDS, including adults much older than Bella. “I came back so positive,” she said. She decided to raise Bella with that same outlook. “I really wanted to wrap her in a bubble,” she said. “But I thought, I’m going to hurt her more [being overprotective]. She’s going to grow up living in fear.”
Frances gathered her large extended family at her mother’s house to explain the diagnosis, and everyone has been supportive of Bella ever since. Bella’s advice for anyone caring for a loved one with VEDS: listen.
“Be a listening ear, even if you don’t fully understand what’s going on,” she said. “It can be isolating even if you have a large support system, if nobody else has VEDS and truly gets it.”
Practical help, like cooking a meal, cleaning or setting up grocery delivery, matters too. “Living with VEDS is a full-time job,” Bella said. And what touches her most? “If somebody tells me that they looked up VEDS [to better understand the condition], it just melts my heart. That’s enough for me, just that they looked it up and spent time to figure out a piece of me.”
Frances, who is an administrator for two of the most well-known VEDS support groups – VEDS Genetically Confirmed Group (https://www.facebook.com/groups/vedssupportgroup) and VEDS Zebra Support Group (https://www.facebook.com/groups/veds.zebra.support.group) on Facebook – regularly connects with parents who have just learned a child has VEDS. Her advice to them: “Knowledge is power.” She encourages families who can travel to see a VEDS expert, and to keep searching for local doctors who will listen.
She also wants people to understand how serious VEDS is, a concern Bella shares. “They can try really hard to understand that VEDS is serious, but they don’t really get it until they see it with their eyes,” Bella said. “I worry that people are going to wait until they actually lose their loved one to finally understand how serious it is.”
As volunteers, Bella and Frances helped shape the VEDS Movement from its outset, as original steering committee members. She calls the VEDS Movement “the best thing that ever happened to the VEDS community.”
As a proud mom, Fran cites Bella’s positivity and her willingness to share her own medical experiences so others recognize warning signs and seek care as particular qualities she admires in her daughter. Her hope is a better quality of life for everyone living with VEDS.
Fran’s dream for everyone living with VEDS when it comes to facing medical setbacks? “Hope for a more normal life.”
Pictured top are Raul, Bella, and Frances Marin
Learn more about VEDS at thevedsmovement.org
Be ready for VEDS emergencies, educate first responders and healthcare teams
veds911.com
Read more about the Marin family
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.