New Memoir Draws Attention to Sickle Cell Disease
February 18, 2015
Dominique has Sickle Cell Disease (SCD) and, despite the challenges involved in living with Sickle Cell day to day, she has been a tireless advocate for improvements in research and treatment of the disease and for the development of comprehensive patient support services.
Her activities have begun to attain momentum as the recent publication of her memoir, Sickle, a Personal Journey of Pain, Purpose and Perseverance, has drawn attention. Dominique had a dual purpose in writing this memoir: to support other Sickle Cell patients with a message of understanding and encouragement, and to educate families, friends, and medical and science professionals on the patient’s experience and point of view.
Many readers have found a meaningful message in the book and some have already been spurred to action – from the pharmaceutical firm Novartis, which has purchased the book to use as a training Manuel, to the White House, where Dominique recently organized and conducted a meeting of Sickle Cell patients and medical specialists with Kareem Dale, Special Assistant to the President for Disability Policy.
The book has been especially important to other Sickle Cell patients, who find not only someone who understands their pain and frustrations intimately, but someone who has made it through those trials and still offers a message of hope and encouragement. Here’s what Sophie Lanzkron, Director of the John Hopkins Sickle Cell Center & Assistant Professor of Medicine and Oncology, had to say about SICKLE…
“Providing medical care for people with Sickle Cell Disease can be challenging, but it is also an opportunity to meet incredible people living with this devastating chronic illness. In this book, Dominique describes her experience of living not only with Sickle Cell Disease but also with Lupus. Her feelings of not being heard, of being misunderstood and of not being believed are all too common for people with Sickle Cell Disease. This book offers the opportunity for others suffering with chronic illness to see the similarity in situations that they all share. Dominique describes the difficulties of living with chronic illness and yet remains hopeful that she can live a happy and contented life. This message will allow readers to have the same hope; it should also empower them to demand that they receive the care they need and deserve. This book provides insight for all of us, those who provide medical care for people with the disease and those who care for family and friends with the disease. It is important that we see and understand an insider’s perspective on what it is like to wake up every day with this disease. I hope that this understanding will motivate us to broaden our perspective and to work toward improving the quality of life of those who have Sickle Cell Disease.”
Sophie Lanzkron, M.D.
Dominique has been using her resources to help, encourage, motivate and bring hope to others who are challenged by a chronic illness. She had previously been interviewed by Comcast Cable News and her awareness message has been aired repeatedly by the cable channel. Dominique has spoke at many speaking engagements, most recently at Wellspan/York Hospital where she spoke from the patient’s perspective of living with an invisible disease and at the Florida Sickle Cell Symposium where she shared of the importance of developing successful advocacy strategies.
Recently she established the Research Education Awareness and Prevention (R.E.A.P.) Campaign in partnership with Future Marketing Group LLC (FMG) to address the Standard of care across the board in the Emergency Room, which was discovered as one of the main concerns of adults living with SCD, through a series of questionnaires and surveys. We met and presented an outline to the Joint Commission in hopes that they would bring together organizations that create policies for Emergency Physician Group, etc. Sponsoring multiple events designed to draw, patients, families as well as ER Providers together through open dialogue while addressing the lack of understanding and stigmas associated with SCD. Lastly we have begun conversations with a team who are developing Urgent Care Centers, which could possibly be used as an alternative to the ER problem. In doing so, we’ve partnered with MD Logix™ , a Maryland based Health Innovations IT Company, who has developed a web-based tool which will allow the Emergency Room Physicians to have immediate access to the individual patient’s medical needs, as it pertains to pain management in SCD patients.
Dominique’s story has been featured in many magazines, such as (Ebony and Heart & Soul July 2011), news articles and television. Her outreach extends as far as Africa and other parts of the world. She has been invited to participate in conferences sponsored by the National Institute of Health and she most recently visited the White House and met with the President’s Special Assistant on policies and Disabilities, Mr. Kareem Dale.
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