Finding Hope and Community Through the Hemophilia Forums

Finding Hope and Community Through the Hemophilia Forums
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You are not alone. Coping with hemophilia as a patient, caretaker, or medical provider can seem overwhelming at times. When I am overwhelmed, have a question, or just want to talk to someone who I know will “get it,” I reach out to my “blood sisters” and “blood brothers”: my hemophilia community.

The power of community

The hemophilia community has been a tremendous source of knowledge and strength for me these past few years. They gave me information to help me understand my condition and supported me, sometimes fiercely, as I learned to advocate for appropriate treatment as a woman with hemophilia.

The community helped point me to treatment centers that specialized in areas I needed assistance with. I can say with the utmost certainty that I would not have the excellent care I have today without my community. My quality of life has improved in ways I never dreamed possible.

My gratitude for the hemophilia community and the impact we make on each other’s lives drew me to become involved in building and moderating the hemophilia forums for Hemophilia News Today. I want to continue to give back to our community. I also want to assist others as they seek to gain information about how to manage life with hemophilia as a patient, caretaker, or medical professional.

Joining the Hemophilia News Today Forums

Please join us in the Hemophilia News Today Forums. We want to hear your voice. As we unite, we feel empowered, we gain hope, and we know we are not alone.

The Hemophilia News Today Forums are a great place to pose a question, add your knowledge, or assist others by reaching out and offering your personal knowledge and experience. There are a variety of subject areas to engage in when visiting the forums page: Living with Hemophilia, Hemophilia Treatment, Parents and Caregivers, Hemophilia Inheritance, Women with Hemophilia, and Types of Hemophilia. As our forums grow, we will add additional areas to address our community’s needs.

Registering to use our forums is easy! Simply head to the forums page and register with your name, age, and hemophilia affiliation. Once you’re there, you will see that the forums have a code of conduct we ask all participants to abide by. If you choose, you can create a bio for yourself. Carrie Barnes Recker and I are your moderators, and we will be in the forums to assist you and ensure the community is a safe space. Any inappropriate content will be removed.

We can’t wait for you to join us!

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

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. As a woman with hemophilia, Shellye feels fortunate to have obtained a correct diagnosis and access to care, albeit later in life. Her desire is to spread awareness that women also have hemophilia and need appropriate and equitable care. Shellye lives in Northern California, where she and her dog, “Hope,” love to play on the beach and wander through the majestic Redwood forests.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. As a woman with hemophilia, Shellye feels fortunate to have obtained a correct diagnosis and access to care, albeit later in life. Her desire is to spread awareness that women also have hemophilia and need appropriate and equitable care. Shellye lives in Northern California, where she and her dog, “Hope,” love to play on the beach and wander through the majestic Redwood forests.
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