podcast on women with bleeding disorders

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What role do Dad's with Hemophilia play in helping their daughters discover 
​In this eye-opening episode of the Hope Podcast, host Jonathan James delves into the often-overlooked topic of women living with hemophilia. Joined by Naomi and Ivan Giron, the conversation explores the multifaceted challenges and triumphs faced by women with this genetic bleeding disorder. This episode is a profound exploration of advocacy, treatment challenges, and the vital role of family support in managing hemophilia.

Hemophilia is typically perceived as a male-dominated condition due to historical research and focus. However, women also suffer from this genetic disorder, often facing unique challenges such as menstrual management and the battle for proper diagnosis and treatment. Naomi Giron shares her personal journey from ignorance about her condition to becoming a proactive advocate for her health. She details the difficulties she faced in obtaining necessary medication due to gender biases in medical treatment, underscoring the critical need for more research and resources dedicated to women with hemophilia.

One of the most striking aspects of the episode is the discussion on menstrual health. Naomi recounts her struggles with heavy menstrual bleeding and the limitations of traditional treatments. The conversation emphasizes the importance of open communication within families, especially between fathers and daughters, to manage hemophilia effectively. Ivan shares his experiences growing up with hemophilia, highlighting the mental resilience required to cope with the condition and the importance of family bonds in providing support.

The episode also sheds light on the historical focus on men in hemophilia research, which has led to a significant lack of resources for women. Naomi discusses the substantial improvements she experienced after receiving proper treatment, including the use of factor infusions that significantly reduced her menstrual bleeding. This segment underscores the importance of education, advocacy, and community support in improving hemophilia treatment for women.

Documentation and meticulous tracking of treatment progress are crucial elements discussed in the episode. Naomi emphasizes the importance of maintaining detailed records to assist in advocating for necessary medical interventions. This practical advice is invaluable for those navigating the complexities of hemophilia, providing a roadmap for effective health management and insurance purposes.

The conversation also explores the challenges of self-infusions and blood work, particularly for individuals who dislike needles. Naomi and Ivan discuss the emotional and practical aspects of managing a bleeding disorder, highlighting the significance of building confidence and skill in self-care techniques. This segment is a testament to the mental resilience required to handle the medical procedures associated with hemophilia.

Preventative treatment for joint health is another critical topic covered in the episode. Ivan shares his experiences with joint issues due to bleeds and the long-term damage that can occur if left untreated. The discussion highlights the importance of prophylactic treatment in preventing such damage and the struggles of navigating insurance approvals. This segment underscores the necessity of advocating for adequate preventative care to maintain joint health and overall well-being.

The episode also addresses the broader implications of advocating for better medical treatment and systemic changes in the medical community. Naomi's journey to empowerment and proactive health management serves as an inspiring example for others. The conversation emphasizes the importance of continually seeking improvements in medical treatment, particularly for women who are often under-diagnosed or under-treated.

Community support and education are vital themes throughout the episode. Naomi shares her experiences attending women's events and the value of open conversations about personal experiences. These events foster understanding and advocacy, providing a supportive environment for women to share their stories and learn from one another. Ivan and Naomi's stories highlight the significance of communal support in managing and understanding hemophilia.

In conclusion, this episode of the Hope Podcast is a powerful exploration of the challenges and triumphs faced by women with hemophilia. It underscores the importance of advocacy, education, and community support in improving hemophilia treatment. Naomi and Ivan Giron's journey serves as an inspiring call to action for systemic change in the medical community and better support for women with genetic bleeding disorders. Tune in to gain valuable insights into the resilience, family support, and collective effort required to navigate the complexities of hemophilia.