April showers have passed, and along with flowers, May ushers in Mother’s Day. There is no question that our mothers play a special role in our lives. At Western New York BloodCare we wanted to take the time to celebrate women who are uniquely our patients and mothers.
We are honored to have had the opportunity to speak to Jennifer White and Mary Comerford – two patients at Western New York BloodCare, and two women whose families also receive treatment at our facility.
Jennifer and Mary have outlined their experiences with bleeding disorders; caring for themselves, and caring for their families. It has been a long road for both of them, and we’re happy to have shared their journey with them.
For Mary, the diagnosis of her bleeding disorder came as a surprise. She had gone most of her life without knowing, despite suffering from symptoms. “I discovered my bleeding disorder when my third daughter was diagnosed with Von Willebrand Disease (VWD) at the Cleveland Clinic. Throughout my life I suffered symptoms including joint bleeds, nosebleeds, dental bleeds and many more but was never diagnosed. It was a relief to put a name to my symptoms, but it was terrifying to discover that my daughters were all impacted.”
Jennifer’s diagnosis was also delayed, and it was after her last child was born that she learned that she – and her other children – needed treatment for their disorders. “I am a carrier for Severe Hemophilia A. I found out through genetic testing about 6 months after my oldest son, Alex was born…he has Severe Hemophilia A, and was diagnosed the day after he was born in 2005.”
We’ve heard this same issue over and over again. Girls and women not being diagnosed with a bleeding disorder until they experienced a life altering episode, like childbirth. That is why we started the S.H.E. Clinic three years ago. The S.H.E. Clinic is one of a handful in the country promoting the early diagnosis and treatment of girls and women who present with heavy bleeding. Of which, nearly 30% can have an undiagnosed’ bleeding disorder.
Mary and her family have experienced a range of symptoms and diagnoses, and it took herself and her husband years to even recognize there was an issue. “My family has a range of bleeding disorders including Hemophilia, to VWD and Factor V Leiden,” she explained. “My four daughters and my husband all have bleeding disorders.
“My husband and I were both undiagnosed when we married. We didn’t think anything of each other’s bleeding episodes from wisdom teeth removal, shaving cuts, and bruising because to us these were normal experiences.
“The bleeding disorder has made me more cautious as a parent and a person. It has guided some choices such as contact to non-contact sports and has resulted in a more risk-averse lifestyle. Although we know that we can be supported through most experiences, as a family we are aware that some risks simply aren’t worth taking.”
Bleeding disorders have certainly influenced the life decisions of Mary and her family. Jennifer used this as a spark for a new career. “After spending countless hours at the emergency room for infusions, days checked into the hospital, and seeing the stress and emotional turmoil it was causing our whole family, I decided to go back to school for phlebotomy. I wanted to be able to provide our son with the best care I could and to show him that we were in this together. Over the years, we have become a great team. The bond that we have created through this has allowed Alex to be open and honest with us (as his parents) about how his body is feeling, if he is having a bleed, if he had any injuries, concerns about anything, etc… As for our other children, hemophilia has always been a completely normal part of the lives. They are all younger than Alex, so they have grown up in this “lifestyle”. They truly do enjoy being a part of/involved in the hemophilia community and showing their support for their brother.”
Daily life for these two families involves an additional level of concern, with a focus on trying to maintain normalcy. Long-term, both Jennifer and Mary hope to educate their children, and push them to advocate for themselves and for others. “My long-term goal is for my daughters to understand their bleeding disorders and to advocate for themselves,” Mary said. “Young adults often believe they are invincible. That carefree youth must be balanced with responsibility. Even small procedures such as dental work must be considered in light of the bleeding disorder. Surgeries, illnesses and traumas all require special measures."
Jennifer agrees that educating her son could be a lifesaving measure. “For example, teaching him how to recognize a joint/muscle bleed, how to give himself his own medicine, how to log his medicine, how to do his own ordering through the hemophilia pharmacy, the importance of always having insurance, teaching him that communication is the key to treating a bleed and getting it under control, teaching him the importance of listening to his body for what he can and can’t do.”
Jennifer and Mary are grateful for the care they, and their families have received at Western New York BloodCare, and Jennifer loves the sense of family the facility nurtures. “they all know our names without looking at Alex’s chart! This isn’t just a doctor’s office. It is a whole community. What other doctor’s office do you know of that does summer picnics for their patients and families, has teen retreats, educational dinners/seminars, camping trips, Christmas parties, and other various family outings? They go to great lengths to show their patients and their families that they are not alone.”
Mary is proud to be able to give back to the community. “I am now a member of the Board and Foundation of WNY BloodCare. It has been a uniquely rewarding experience to work with the committed and compassionate staff and providers at WNY BloodCare. After all these years I am finally able to give back to those who have given my family so much.”