Page 18 - HFA Dateline 2021 Q4 Winter

Being Told ‘It’s Normal’ Afterward, she became depressed. “We’re brought up and
Tammy Jones, age 61, of Greenwood, Arkansas, lived with taught that our bodies are made for having children, and
heavy bleeding from her first menses into her early 30s. [after] that was taken away from me, I had a really hard
She and her four daughters have VWD. Bleeding—from time,” she said.
her nosebleeds and bruising, to her heavy periods—wasn’t When her third daughter started having frequent heavy
talked about when she was younger. Then, after the birth nosebleeds, she was sent to the children’s hospital. Jones
of each of her children, she bled much longer than she requested testing for herself and all her daughters. They
thought she should.
were all diagnosed with moderate Type 1 VWD.
“At my six-week check-up I was still bleeding,” Jones After that, Jones’ daughters each dealt with their own
explained. “I would nurse the babies and I would have bleeding episodes and complications with heavy periods
gushes.” Once, after nursing her third daughter, she stood and hysterectomies. “I see my children not being able to
up, and “blood just went everywhere. I screamed, my have children because of this bleeding disorder,” Jones
husband came in, and we called the doctor.” Get in the said. “It’s very hard because I go back to the fact they got
shower, she was told, elevate your feet. It’s normal.
this from me.” Still, she said, her goal is to make sure her
When she was 34, her doctor brought up the idea of a kids and two grandchildren don’t struggle the way she did
hysterectomy. Jones wasn’t ready. growing up. A grandson was also diagnosed with VWD.

But by the time the next year came around, she could Getting connected with organizations such as HFA can
hardly function. “I couldn’t leave the house because I provide education and support. When her son was seven
would bleed through a tampon and through doubled months old, Voyles became involved in HFA. She read
overnight pads and onto my clothes.” When she went everything she could on VWD. “If HFA had an article
back to her appointment, she agreed to the surgery. come out, my husband and I were reading it.” While her

Knowledge = Power

Whether you’re newly diagnosed or have been living with a bleeding disorder for years, knowledge is
key when it comes to managing your health. Here are a few things to keep in mind:

TAKE NOTES
Document bleeding events and the treatments that worked. Take photos of bruising and the amount of blood
you’re experiencing to show your provider, even if you feel awkward or embarrassed. “You need to use your
organizational skills to take ownership of your own health care,” said hematologist Robert Sidonio Jr., MD.
This helps build the case to allow clinicians to perform more interventions and better understand what’s going on.
It also helps them advocate on your behalf to insurance companies to cover certain treatments.

KEEP AN OPEN MIND
Your bleeding symptoms may not be related to your bleeding disorder. For example, your joint pain may need to be
treated with orthotics and not have to do with a bleed, Sidonio said. Be willing to try new strategies and treatments.

FOCUS ON YOUR MENTAL HEALTH TOO
Take care of your own mental health. “That’s the thing I’ve struggled with the most is knowing it’s OK to ask
for help,” said Kristin Voyles, who has von Willebrand disease (VWD). “To take time for me to sit in a hot bath
and relax and get my mental clarity back.” Allow yourself to step back and focus on things other than your
bleeding disorder.

GET A SECOND OPINION
“If you aren’t getting the answers you want with one doctor, go to a different doctor,” said Leisa MacDougall, who has
VWD. “There’s somebody that will listen to you and get the answers you need. Don’t stop until you get those answers.”

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