There Is Lifesaving Wisdom and Care in the Hemophilia Community

Thank goodness for the great friendships that we forge along the way. Those of us who live with chronic illnesses learn the most about caring for our loved ones from those who are in our communities. While teaming with medical staff is crucial to the diagnosis and treatment of the illness, communication with families and friends who have experience in the day-to-day living in the trenches provides support and knowledge from a personal point of view. Combining both professional and informal strategies assist in the overall well-being of those we love.

When “MacDonald the Older” came on the scene, my wife and I knew nothing about hemophilia. A bleeding disorder never entered my wheelhouse until he was born. We turned to the internet to educate ourselves and what we saw painted a bleak picture of the future of our son. We contacted our Hemophilia Treatment Center for guidance and members of the community reached out to us. Caregivers assured us that what we read online was a result of negligence that happened several years before the birth of our son. Our issues would be completely different.

Through the friendships we discovered along the way, we found that we were more than capable of handling our son’s needs. Years passed, but the relationships forged through the trying first years of parenthood still hold a special meaning, and we always take time to share our experiences whenever we see each other at national events.

One of the greatest lessons we learned from a dear friend concerned how to surrender control of managing hemophilia to our son. Gloria, a friend, told us that in ninth grade she taught her son how to order medical products from pharmaceutical companies and how to steer clear of the representatives who looked at him and only saw dollar signs. She told her son the names of the people of whom he should steer clear. Gloria also let him know the people he could trust. We listened to her and raised our son with the same eye for navigating his way through the bleeding disorders community. Because of her wisdom, we were spared the heartache of shady deals and lousy direction. Thank you, Gloria and her husband Gustav, for showing us the best way to help our boy.

My son is an adult now, and the process of entrusting him with his story was a necessary but painful journey. Each piece of the pie that we surrendered to his care meant one part of his childhood left behind. Hemophilia became his to control as he entered adult life equipped to navigate the waters of insurance, ordering product, and protecting himself from predators. Because members of the community reached out to us, we enjoyed a relatively smooth transition from adolescence to adulthood.

We hope to pay it forward and assist newly diagnosed parents with resources beyond our imagination. We all know what it is like to receive the diagnosis that turns our world upside down. We remember the feeling of panic and fear. How can we manage this? In a moment of hopelessness someone, or some people, came into our world to guide us on our journey. Soon we realized that we are no longer hopeless, but empowered. It all started with someone reaching out to lend us a hand. I hope you are the person who someone else needs when they are at the end of their rope.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.