Trina Greer and Oraia

This Spotlight appeared in our April 2026 newsletter.

Please introduce yourselves and tell us something that would surprise people about your family.

My name is Trina Greer, and my daughter, Oraia (pronounced Oh-ray-uh), has VWD Type 1c Severe. Most people seem surprised when I tell them I have five kids and five pets. My kids are Ruthie (19), Caleb (16), Jordan (14), Oraia (11), and Angelo (8). Our family is the five kids, me, two dogs, a cat, a guinea pig, and a bearded dragon.  My dad is an important part of our lives as well, and the kids enjoy spending time with him.

Where does your family live? What is one thing you would encourage a visitor to do if they visited for the first time?

We live in Canonsburg, Pennsylvania, which is about 25 minutes south of Pittsburgh. There really is so much to do in the Pittsburgh area: sports events, museums, festivals, etc. If someone were to come to Canonsburg, Sarris Candies is a must-visit—they have the best chocolate, an old-fashioned ice cream parlor, a chocolate castle, and amazing decorations. Some fun events in Canonsburg where the community comes together include Oktoberfest, Canonsburg’s Old-Fashioned Christmas, and the 4th of July parade/festivities.

There are moments our Members will always remember, like when they first heard about severe VWD, were diagnosed, or maybe even when they were first connected to the Foundation. There can be years between those events, but in your family’s case, in was a matter of days! Can you tell us about what prompted Oraia to get diagnosed?

At age 8, she had a nosebleed that was going longer than normal and not slowing down at all. We ended up at the ER and did some bloodwork. They told us that she has VWD, and a few days later Oraia saw a hematologist through Children’s Hospital Pittsburgh.  He told us that she probably has Type 1 VWD which would not affect her life much at all – just things like surgery. He took more bloodwork to confirm a diagnosis. Later that week at 4:00pm on Friday afternoon, I received a call from the hematologist’s office. They informed me that Oraia had Type 3 and that she was too severe for them to support her. We were referred to the Hemophilia Center of Western Pennsylvania.

How were you then connected to the Foundation?

The call caught me off guard, and I didn’t think of all of the questions I should’ve asked until after hanging up. At that point, the office was closed, so I would have to wait until Monday to call the HCWP and ask my questions. So, I decided to turn to Google to see if I could find any information. Unfortunately, a Google search mostly only told me that Type 3 is severe and very rare. I ended up coming across the Foundation’s website, and I emailed [Foundation Executive Director] Jeanette in hopes of getting any information I could about Oraia’s new diagnosis. She had a basketball game the next day, and I had no idea if it was safe for her to play in it, make any immediate changes, or if we were fine to wait until we went to the HCWP clinic. Jeanette ended up calling me, and we talked for a long time. She was a lifesaver and helped me so much with processing the diagnosis and being able to get through until we were able to get Oraia to the HCWP. Jeanette also let me know information about the Foundation and encouraged us to attend the next conference. When we did end up going to the HCWP, they did the genetic testing, and we ended up learning that Oraia has Type 1c, not Type 3.

What were your biggest fears or questions at that time?

I was worried about what changes we would need to make for Oraia’s safety. I wanted to be able to support Oraia through the diagnosis as well as help her siblings learn about it. I wanted to learn as much as I could about her diagnosis and how to best support her. I have always had a major blood/needle phobia, so doing her infusions myself seemed to be something
I would never be able to do.

What have been some of your biggest “wins” looking back years later?

I continue to worry about her and the potential for bleeding concerns, but I have been educated now and feel prepared to handle any situations that may arise. I have been proactive about making sure all adults in her life are aware of her condition and how to respond in various situations. Getting a doctor to agree to prophy was huge… her doctor would not agree to it for “just nosebleeds” even though we were going to the ER for PRN infusions at least a couple times a month – sometimes a couple times a week. In March 2024, when she had a joint bleed in her knee, she saw a different doctor at the HTC. He started her on prophy which she has been on ever since. It has been life-changing. I still struggle with blood and needles when it comes to myself, but once I was able to get Oraia prescribed prophylaxis I learned how to infuse her and have been doing it ever since.

How did that switch to prophy effect how you and Oraia navigate severe VWD?

Since on prophy, her bleeds have greatly decreased.  Now, she usually only treats PRN (as needed) for bleeds about once a month. She still has nosebleeds but infuses less often, and they usually only last 10-15 minutes instead of an over an hour. Here and there she still will have muscle or joint bleeds or a bad bruise. I don’t have to worry as much about needing to drop everything and get to Oraia to infuse her.

How has severe VWD changed the way your family supports one another over time?

I have adjusted the ways that I make sure to support Oraia to match what her needs are now. I have learned that to support a kid with medical needs, the parent often has to advocate a lot. Emergency Room staff do not know much about the condition and will brush you off and close doors in your face, and you need to be prepared to speak up and to enlist the support of the hematologist. I don’t know that VWD has affected the way my kids support each other as siblings, but they are all aware of her condition and that they need to be careful around her and let me know if anything happens. [Editor’s note: We asked Oraia the same thing, and she summed it up nicely in three words: “Mom doing infusions.”]

How has joining VWD Connect been supportive for your family?

Getting to know other people who are going through the same thing as we has been so nice. At local events, most people have Hemophilia, and those with VWD don’t have severe. VWD Connect has been great in that everyone has severe and understands what Oraia deals with day to day.

COUNTDOWN TO THE CONFERENCE BONUS INTERVIEW

When did your family first attend a Conference?

2023 was the first conference we attended. What I remember most about that conference was getting a chance to learn a lot during sessions as well as from the experiences of other members. Oraia, Angelo, and I have now attended three conferences and are looking forward to this year’s.

Fun memories?

We have had a lot of fun at the conferences. I have enjoyed spending time with the kids and getting to know new people. The kids especially enjoy going to the pool at the hotel. Angelo’s (above on the right) favorite parts are childcare with his friends, the petting zoo, hanging out with Oliver, and going to the pool. Oraia loves Trivia Night and the Trivia Zooms, I have been surprised at some of the answers Oraia and Jordan know. We came a day early last year and went to a turtle rescue in the area which was really cool.

Oraia, if you could pick any activity to add to next year’s conference, what would it be?

Pickleball! •