A Message to Parents of the Newly Diagnosed: Be Grateful
March is Bleeding Disorders Awareness Month, when patients and families who live with bleeding disorders post facts on social media and share their stories to educate those with little understanding of how a chronic illness affects daily life. I have participated in numerous events to educate the community, and this year I feel a need to reach out to a different group: parents of the newly diagnosed.
I have a special place in my heart for the parents of a child newly diagnosed with hemophilia. In 1996, I brought my firstborn son home from the hospital. Instead of feeling joy and happiness, I was afraid. As I adjusted to life with a newborn, the local bleeding disorder community came into my life and helped me understand that hemophilia was not a death sentence.
In the early days of raising a son with severe hemophilia A, I learned that the hemophilia treatment center (HTC) was my main point of contact for all issues regarding bleeding. The HTC helped me learn to mix factor and eventually to infuse my son. It also helped me through the difficult times when infusing was not easy.
Treating hemophilia A in 2022 is much different than it was in 1996. Through the ups and downs of treating my son’s condition, I understood the importance of infusing factor per doctor’s orders. When my son would bleed between treatments, I did my best to treat each episode as quickly as possible to minimize joint damage.
Because treatment for hemophilia A has improved tremendously, living with the long-term effects of bleeding may never be an issue for young children.
While speaking to parents, I also want to be a voice that helps the newly diagnosed understand the importance of their diagnosis. There are treatments for hemophilia A that are life-changing for many. Those patients who begin life without excessive bleeding and continue to keep their bleeding under control may never feel the pain of a swollen joint. This is wonderful, yet it may easily lead to complacency.
I hope not feeling the pain of a swollen joint becomes the norm for all who live with hemophilia. In the meantime, I will continue to remind the newly diagnosed to take their condition seriously. Visit the HTC at least on an annual basis, and do not hesitate to reach out to the HTC when additional questions and concerns arise.
To the newly diagnosed, I say be grateful for factor. Be grateful for life-changing treatments. Be grateful for the bleeding disorder community that surrounds you. Finally, stay vigilant with treatment so that complacency never becomes an issue.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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