Vicki & David Jacobs-Pratt
This Spotlight appeared in our November 2025 newsletter.
Please introduce yourself and tell us how you got connected to the Foundation.
My name is Vicki Jacobs-Pratt and I have VWD type 3 severe. I was diagnosed in 1960 but did not receive anything but cryoprecipitate until around Y2K. At that time, I got connected to an HTC and my local hemophilia foundation in Maine. I learned that I could treat on demand with a VWD factor replacement concentrate and started to do so.
My husband, David and I were married in 1976 and will be celebrating our 50th anniversary in 2026. He served for 20 years in the Navy, and we lived up and down the East Coast. After retirement, we settled back in our home state of Maine and raised our children.
We became very involved with the New England Hemophilia Association and I started working for them on a part-time basis. Through that I became involved with the National Hemophilia Foundation and helped to build an outreach awareness program called Project Red Flag, raising the awareness of VWD and Women with Bleeding Disorders. Through these programs, I met a number of people all over the United States. One person I met was Jeanette Cesta who years later asked me to attend the first VWD Connect Conference in 2017.
Where do you live, and what’s a local hidden gem you’d recommend to visitors?
David and I are currently retired and living in a small Florida town, Inglis. Inglis is located on the Nature Coast right next to the Gulf of America. It is old Florida and only has about 1500 residents. If you take County Road 40 West through Yankeetown, you will end up at the “End of the Road” at a boat ramp. The area is absolutely gorgeous particularly at sunset. It has piers to fish from, two beaches and a picnic area.
What was your relationship with sVWD like when you first got involved with the Foundation?
I was pretty comfortable with my diagnosis and treatment at the time. I was treating prophylactically every 48 hours with factor concentrate. However, I was still having breakthrough bleeds. I was learning about PK studies and starting to track how I reacted to my product. Since, I have switched to a new product and have not had a breakthrough bleed. I also infuse every three days instead of two.
What year was the first Conference you attended together? How did that impact how you approach sVWD as a couple?
David and I attended the 2018 Conference together and that was his first national conference. He was thrilled to meet others who had similar experiences as we did and exchange ideas and tips.
Of all your years attending the Conference, which were most impactful or memorable?
In 2023, I responded to a Facebook question regarding type 3 VWD from a young man who had been diagnosed with VWD his whole life but did not treat. He was looking for guidance and felt rather isolated. I mentioned to him about the VWD Connect Conference and suggested he call and see if he could register for the 2023 Conference. He did and we met face to face there for the first time. I could see that he was just absorbing all the information.
The next year, 2024, we both attended and on the last day there was a program of handing out a rose to someone who had made an impression on you during the conference. I nearly burst out in tears when this man gave me a rose. It meant so much!
Thank you both for planning to participate on the Patient Panel at the Provider
Education Workshop on sVWD this month. What are you looking forward
to about the experience?
I look forward to hearing what is in the pipeline for the future of VWD. I also wonder if this would give providers the opportunity to learn more about
patient needs outside of the clinical environment.
Vicki, as a longtime advocate for people living with VWD, what does advocacy mean to you? How did you start? How has being an advocate for sVWD patients shaped your own patient journey?
It has given me the power of my voice to direct my care in a knowledgeable way. When I first became involved with NEHA (New England Hemophilia Association) in 2001, I was appalled that the average diagnosis time for a woman with a bleeding disorder was 16 years! Why was this so, and how could I change it?
I realized that raising the awareness with healthcare providers would make the most sense as they see hundreds of patients. I started to display informational materials at various medical and dental conferences throughout New England and talking to providers. This led me to volunteer with NHF on their Project Red Flag program and offered me grants to attend more conferences to spread the information.
I then helped organize the Foundation for Women and Girls with Blood Disorders (FWGBD) in 2009 and stayed with them as Operations Manager until 2014. During this time, we were able to reach out to national organizations such as American Society of Hematologists (ASH) and American College of Obstetricians and Gynecologists (ACOG) as well as pediatricians.
Over the years, how have you seen the bleeding disorder world change as a result of advocacy work? What should current/future advocacy efforts focus on?
I have been out of active advocacy work for the last few years so do not know if the statistics have changed, but I get the feeling that there is more to do. In 2019, I was given the opportunity to serve on the ASH/ISTH/WFH/NHF working group to re-write the criteria for the diagnosis of VWD. These guidelines which were released in 2021/2022 created a uniform system of diagnosis worldwide. It also brought VWD to the forefront of providers who may not have considered VWD as a reason for their patients’ symptoms. Hopefully, with these standards out their more people will be appropriately diagnosed.
What would you each say to patients and caregivers in a new Member family? Any particular advice or encouragement?
Vicki Patient to Patient: Relax….know how VWD affects you and know how your treatment affects VWD. Have PK studies done to make sure you have adequate treatment, if not, do not be afraid to challenge your hematologist to find alternatives.
David Caregiver to Caregiver: You have come to the best place to connect with fellow caregivers and resources! We had no resources or connections and people did not believe Vicki had the disease. I’ve gone from watching whole blood transfusions because of my wife’s bleeds to seeing her now use prophy to prevent bleeds. We are here today to support new members, young and old with their questions and struggles living with a severe bleeding disorder.
What is a certain quality or skill that you see/admire in the other that managing
sVWD together has shown you or brought to light?
David has always been supportive of me and my bleeding disorder. In the beginning, he advocated for my care when I could not. He has watched me progress though my bleeding episodes and applauded when new treatments were found which gave me a quality of life which neither one of us imagined. •