This is where the written development of your sickle cell story begins. Partner with us to document your truth about living with sickle cell disease. Early SELF awareness can lead to better care.
Is here to uplift the lives of individuals living with sickle cell disease. Our first goal is to encourage SELF awareness and build skills to discuss medical trauma. We want children who are born with sickle cell disease to feel empowered, even with the challenges they may face from the condition. Living with a chronic medical condition is often accompanied by low Self-esteem that can significantly affect health-related quality of life and well-being. The W.O.M.P journal can minimize said outcome with early interventions promoting empowerment over one’s condition.
Together we will give attention to the daily
practice it takes to boost low self-esteem that are connected with chronic illnesses. And as we do the work, we will see an increase in sickle cell
education, advocacy and awareness. Hopefully resulting in improved care and Universal cure for Sickle Cell Disease.
This is a workbook-style journal for young people living with Sickle Cell to document their unique journey with this chronic condition. The journal is a reflection of your day-to-day life with sickle cell to help build systems of support as well as to understand the many aspects of the individual and their chronic illness. One can use this journal as a self tracking, personal growth and liaison tool. The journal’s main focus is to build early awareness for strong healthcare expression. Unlike other journals that are typically based around privacy, this journal is used as a valuable communication tool.
Use the entries to help communicate with parents, caregivers and even doctors to share the things happening in the body as it experiences changes from sickle cell disease. While on this journey of self-discovery, it should be stated to never forget to appreciate yourself JUST THE WAY YOU ARE! Give yourself permission to make mistakes. Self-advocacy is a tool one needs throughout life. Self-advocacy takes time, knowledge, practice, and respect. This journal will promote self-advocacy which is one of the most important tools to have in your healthcare toolkit.
This journal was developed by a mother, Allison McNeish, who is raising two children with Sickle Cell. She wants to help strengthen the awareness and voices of children living with this condition. She feels they need to advocate for themselves. Having journeyed through many heartbreaking health challenges with her children, finding a way to keep up with the changes they each experienced became vital to Mrs. McNeish. This journal was developed out of love for all that experience this chronic illness.
Writing Out My Pain:Talking about my Sickle Cell Body
Kian is a 10-year-old boy with Sickle Cell Disease. He is the third of 4 brothers and the second with Sickle Cell disease in his family. Kian is a charming, shy boy, who likes to travel and has an adventurous spirit. Kian is still learning how to best cope with his Sickle Cell condition. He tolerates a high level of pain because he does not like to miss out on school or being away from home at the hospital during a Sickle cell attack. Kian, along with his older brother, Tian, wants to share a system that works for them.
Tian is a teenager with Sickle Cell Disease. He is the eldest of the four brothers. Tian is humble, quiet, and patient, with a hint of a wild side, just enough to set the party off when he is amongst his friends. He is currently a high school senior who is exploring colleges. Uniquely, one of the criteria for any college he chooses is proximity to medical specialists such as: Hematologist, Retinal specialist, Sickle cell clinic and Apheresis care. Tian is transitioning from childhood to adulthood and from pediatric to adult care for his Sickle Cell management. Preparing for this new chapter has opened family dialogues in a different way and the experience has inspired him to move forward with creating this journal with his brother Kian.
Our mission is to foster and inspire the open communication of little hearts by encouraging brave voices in such a way that it strengthens support and knowledge.
Hearts, Voices & Hope, LLC
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