An article in
Volume 20, May 2010 Parents Empowerment Newsletter (PEN), by L A Kelley
Communications, Inc. provided some insight about Cheryl and
her book Pooling Blood. The
article: ==>Girls
with Bleeding Disorders: Building a History.
NHF's Hemaware: The Bleeding Disorders Magazine Community Pulse
A Family Matter: Factor V deficiency: How our family learned to deal with a rare bleeding disorder; July, 2010
NHF's Hemaware: The Bleeding Disorders Magazine Rare Bleeding Disorders
Factor V Deficiency: Rare bleeding disorder has no factor concentrate; By Sarah Aldridge, July, 2010
The Source: The magazine of the Plasma Protein Therapeutics Industry
It's rare that I pick-up a book and read it from cover to cover in one sitting! This touching chronicle by Cheryl D'Ambrosio is a story that everyone needs to know about and is a must read for all with a chronic or life threatening disorders. Like most excellent books it touches ones full scope of emotions! The general public will find the book a wonderful read! It's even more important for those in the medical profession to read this book!
It's moving story about a family, (father/stepmother) with two daughters, Teresa and Maria that have a rare bleeding disorder, factor V deficiency. It's a touching account that includes an understated but tender love story! A story of love, devoted care giving, dedication, one life threatening event after another and difficulties within our medical community. Especially true concerning the treatment and recognition of female bleeding disorders.
With the all the struggles that Tony, Cheryl and the girls have experienced, they have been able to go forward. For example, after one serious medical event after another, the youngest daughter has gone on and received her Masters in Architecture from the University of Washington. She has following her fathers footsteps now has a successful career as an Architect!
As a person with severe type A hemophilia, I can so identify with the many prevails in dealing with emergency rooms, interns, charge nurses and others in the medical field. This exasperating and sometimes dangerous situation mirrored my parents and my own difficulties especially from the 1940's through the 1970's.
"Pooling Blood" and it's author Cheryl D''Ambrosio illiterates the significance of being informed about a medical problem and the importance of being your own advocate.
Tom McIntyre Vice President of Bleeding Disorder of Washington (BDFW)
----- Cheryl married a widower with two young daughters with a severe bleeding disorder, similar to hemophilia. One of the girls was brain-damaged secondary to bleeding in her brain. I doubt that Cheryl had any idea what she was getting into, what a tremendous amount of sacrifice and sleepless nights would be required, but she rose to the challenge, great though it was, and still is. For the common hemophilias, better treatments have been available for decades, freeze-dried extracts of plasma, suitable for self-injection at home, made by pharmaceutical companies at a reasonable profit. But these girls have a rare form of hemophilia, an "orphan" disease, a small market, not enticing for drug development. These girls can be treated only with whole plasma, the liquid part of donated blood, which is clumsy and even dangerous to use outside clinics and hospitals. The difficulties encountered right now in getting treatment for the girls are similar to the difficulties faced by patients with the common types of hemophilia fifty years ago, and long since overcome. This memoir reminds us of the burdens borne by parents of children with serious medical problems, especially the unusual ones. It will serve its purpose if it reminds us all to be kind and considerate, to the children, to the parents.
Carol Kasper Winet, MD
-----
In June of 1993, Cheryl married Tony D'Ambrosio. She then became the step-mother to two girls with severe Factor V Deficiency, a very rare genetic bleeding disorder equally affecting both males and females. Cheryl may have been "clueless in Seattle," but she was not the only one to be clueless about bleeding disorders in women. Prior to that era, general awareness was only beginning to emerge about this phenomenon. Because hemophilia A and B are sex-linked disorders occurring predominantly in males, bleeding disorders in women had been largely under-examined, even within the bleeding disorders community. Pooling Blood is Cheryl D'Ambrosio's personal account of raising two girls with a severe bleeding disorder. She describes in vivid detail the overwhelming stress experienced by her family in view of the consequences of the girls' Factor V Deficiency. D'Ambrosio's family had to cope not only with bleeding episodes and their complications, but the inability of health care teams they encountered to respond appropriately to various medical crises. Ms. D'Ambrosio, a devoted caregiver, eventually became a staunch champion of greater awareness and better treatment of bleeding disorders in all girls and women. She has helped create an effective social networking and advocacy base for the entire community. She makes us all aware of the need for enhanced communication within our health care system and need for women with bleeding disorders and their families to strive toward self-empowerment. D'Ambrosio's narrative is enlightening for all readers. It is particularly thought provoking for all health care professionals, not only those in the bleeding disorders field. It provides all interdisciplinary health team members with insight into what it is like to live on "the other side," as a patient and family member. After reading this account, we might all emerge a little less "clueless."
Jacqueline Lefkowitz, LCSW-R, MA, MSW Master Clinician Social Worker New York Comprehensive Center for Hemophilia and Coagulation Disorders New York Presbyterian Hospital-Weill Cornell Medical Center
-----
This book shows how one determined woman can make a difference in the lives of not just her stepdaughters but hopefully many other women and girls with bleeding disorders. If I had someone like Cheryl in my life when I was growing up, I may not have experienced all the pain, endless surgeries, transfusions, and fear that resulted from my undiagnosed bleeding disorder. Cheryl's book is a must-read for anyone who cares about making a difference in the world, and she is a shining example of someone who truly is.
Barbara Forss Executive Director and Founder, LadyBugs, LLC
-----
Hemophilia is a rare and frightening congenital disease among boys, but
among girls it is practically unheard of. In fact, it is estimated that
there are fewer than ten girls in the United States with a severe
bleeding disorder, known as Factor V deficiency, and in wonderfully
intriguing unflinching prose, Cheryl tells us the story of two of them.
Teresa and Maria will capture your heart, as they did Cheryl's, in
their daily struggle to grow up and live with a life threatening
condition.
Cheryl's story begins with finding herself divorced and alone at age
thirty five in Seattle. A few awkward dates with Tony, an architect,
and Italian chef, who happened to be a single father of two young girls,
gave her only a few clues as to what would happen next. Do you believe
that one woman can make a difference in the world? Do you believe that
one woman can persevere in a life and death struggle against enormous
odds through wit and willpower? Do you believe that love and kindness
conquers fear and indifference? Do you believe in ghosts? If not, this
intelligent, personal, touching narrative will expand your world view
and improve your faith in the human race.
Cheryl's remarkable journey contains many lessons and also raises
many questions of a deeper nature for us all. Learning how to prevent a
simple nose bleed from turning into a life threatening medical
emergency is not something that everyone will need. However, learning
how to acquire the knowledge and reasoning to become your own health
care advocate is something that many will need and most will benefit
from. Cheryl and Tony's ongoing battle on the front lines with the
health care system, hospitals, providers, and insurance companies is a
timely wake-up call for everyone.
Cheryl's lessons learned as a health care advocate for her step
daughters who are now adults, provide a recipe for
parent/patient/provider teamwork that should become a model for
treatment of chronic conditions. Indeed, this true life narrative lays
down a roadmap that will benefit patients, parents, practitioners and
institutions alike. Finally, Cheryl's story of Teresa and Maria issues a
challenge to our best and brightest medical, pharmacological, and
genetic researchers that their work will not be done until they find a
cure for even the rarest of human diseases. In fact, I would remind our
scientific community that miracles and breakthroughs often hide in such
places. Someday I want to see those transgenic pigs fly, and I want
to see Cheryl's dream become a reality. Cheryl's story provides the
inspiration.
Richard A. Hull, Ph.D.
-----
Pooling Blood is a beautiful story about one family's journey through
life. It is told in the loving voice of Cheryl D'Ambrosio, who stepped
into the world of her husband and two daughters, both
of whom live with a serious bleeding disorder called Factor V
deficiency. Not only is this book a true testimonial of love on many
levels but also an education in how to maneuver through a complicated
medical system dealing with a complicated disorder. It reads as if
Cheryl is sitting right there with you. The warmth of her voice
throughout helps the reader get through the difficult and painful
passages detailing their girls' struggle to get their bleeding episodes
under control while continuing to live their lives to the fullest. But
we're just reading about it. I am so thankful that the D'Ambrosio family had and continue to have so many good people who have
been there for them all these years. Doctors, nurses and other
professionals in the medical community, the bleeding disorders community
and wonderful family and friends. To say their story is inspirational
doesn't feel like quite enough. Both young girls are beautiful beings
continuing to live their lives and follow their dreams. In yoga we say
Namaste at the end of our practice which means "the divine in me
recognizes the divine in you". Thank you and Namaste, D'Ambrosios, for
sharing your story, it reminds this reader how connected we all are and
how important and vital that connection is.
Cat Stulik, MSW
Social Worker at the Hemophilia Care Program, Seattle, WA
