March is Bleeding Disorders Awareness Month, which means things are a little busier inside the walls of Western New York BloodCare. Things kick up a notch as we extend our advocacy to include visits to the state and national capital, as well as an informational outpouring to increase education for those who may not have known about our organization before.
We took this opportunity to give some of our patients and their families a chance to speak about their experiences with bleeding disorders and with Western New York BloodCare. We’re proud to service this tightknit community, and honored to hear these words from those who depend on us.
Tom Long is our Foundation President, and President of the Board of Directors. Perhaps more significant, he’s been receiving treatment at our facility for most of his life. He described the reach of that care perfectly, saying, “WNY BloodCare has meant the world to my family and I over the past 50 years. For my father, it was starting the center and ensuring those in WNY received proper treatment and management of their bleeding disorders. For my mother, it was being a patient and a caregiver. My mother received treatment for her carrier status but also received support as a caregiver of a child with hemophilia. For my wife, it means having a proper education about bleeding disorders and the genetics associated with Hemophilia. For my sons, it means understanding the disease that affects both their father and their sister. For my daughter, it means receiving treatment for her carrier status. Both my daughter and I are board members for the center and the foundation, myself as the president and her as the secretary. For us it means ensuring our patients and their families receive the best care possible.”
Dealing with a bleeding disorder is a lifelong commitment to treatment. Our patient, Jessica Graham says the initial diagnosis can be daunting because of this[MH1] . “At 17 years old - I was diagnosed with mild von Willebrand Disease (VWD) shortly after my newborn son was diagnosed with severe VWD. My son and I met with a nurse and a hematologist from the Hemophilia Center of WNY [now WNY BloodCare] and they helped me understand how VWD would impact both of us and how to treat any injuries or bleeds.”
The education that Jessica and her family has received from Western New York BloodCare has been significant as time has moved forward. “I relied very heavily on the center when my son was younger and needed to be brought in for infusions of his medication, but he eventually learned how to do his own infusions. Now we both go to annual comprehensive care appointments at the center for regular care and work with the team to coordinate treatment plans for surgeries and procedures so that we can minimize the risk of bleeding.”
Tom has seen the evolution of care, as well. “Throughout the decades I have seen the evolution of the treatments. When I was first treated as a child infusions were done with an IV pole and took hours at a time. We have gone from hours long infusions after a bleed to now prophylactic treatment to prevent a bleed. It is truly incredible how far treatment for bleeding disorders has come.”
Dawson Miller is a budding star golfer. Prophylaxis has given Dawson Miller and his family a host of opportunities they wouldn’t have thought would be possible. “Through the help of our hemophilia treatment center (HTC), we devised a plan that would allow Dawson to continue to live a robust, full and active life by proactively treating him with his product – prophylaxis is the term used for this approach, and we are so grateful to the team at WNY BloodCare that helped establish this approach and plan for Dawson. Their close involvement helps to truly know him, they monitor him and his growth, his bleeds, his factor levels, and they understand the dynamics, both physical and emotional that all teens experience with hemophilia. Our HTC said, this is an active young man, let’s devise a plan that matches his lifestyle, and provides the care he needs in order to wisely go forward.”
This modernized approach has helped Dawson’s athletic career reach new heights. After he suffered a handful of injuries playing recreational softball and basketball, Dawson now represents his school as a varsity golfer. “Dawson began competing in golf at the age of 9. His game grew over the years as he grew stronger and gained confidence, and when he was 11, he was offered the opportunity to attend the CSL Gettin’ in the Game annual event. This program was brought to our awareness by our HTC center, as they felt Dawson would be a great candidate for the event. Well, he certainly did not disappoint, he placed 2nd that first year in the golf competition, and he has been fortunate to return each year, winning the golf competition each of the last four years while representing his local HTC chapter.”
Even with all that has been accomplished, Tom says there is a glowing vision for the future. “My vision for advocacy for WNY BloodCare is to properly teach all patients and caregivers how to advocate for themselves. There is nothing more powerful than someone's story and I think we can empower our patients by teaching them how to advocate for themselves. My vision for care and treatment for WNY BloodCare is to continue to provide the best comprehensive care to all bleeding disorder patients and their caregivers. As treatment for bleeding disorders continues to evolve it’s crucial that we continue to provide the best care to our patients.”
The WNY BloodCare team is focused on quality. “We are all engaged in strategies that look to improve access to care, quality of the care we give, and helping our patients navigate through life’s obstacles that would impede their ability to live life to its fullest. We don’t let “perfect” get in the way of “better”. We recently participated in a study of nine treatment centers globally where our Best Practices were shared with other centers worldwide”, said Laurie Reger, Executive Director. “We work as a team to identify processes and procedures that allow us to work smarter. This is true in the clinic as well as in strengthening our internal organization infrastructure. We are investing in opportunities for telehealth to help reach those patients that have difficulty making it to our HTC. We have extended our efforts to bring more awareness to girls and women who experience bleeding disorders. Our S.H.E. Clinic, one of a handful in the country, is specifically for girls with heavy menstrual bleeding who historically have had no answers to their difficult monthly periods. Our specialists in hematology and gynecology provide an avenue for these girls to identify underlying causes of their heavy periods and what they may be able to do to help live with them.”
The future is indeed bright. Jessica’s closing thoughts were perhaps the most significant in our interviews. She stressed the importance of awareness – not just for the individual. “It's estimated that 1% of the population has VWD, which means that a majority of people who have it have not been diagnosed. The common symptoms of VWD are prolonged nosebleeds, heavy periods, excessive bleeding after dental work or surgery, and unexplained bruising. If anyone thinks they might have VWD, they should give [Western New York BloodCare] a call. It's important that they get the proper diagnosis and treatment, not just for themselves, but for their family members who might also be affected.”