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RARE Pride: A Queer Conversation with Lara Bloom

June 14, 2024

On June 11, 2024, Global Genes hosted a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Below is what one of the speakers, Lara Bloom, had to say during this conversation:

More from Lara:

Embracing My Intersectional Identity: Rare and Queer

Navigating the world with Ehlers-Danlos syndrome (EDS) and as a member of the LGBTQIA+ community has given me a profound perspective on the importance of visibility, advocacy, and empathy. As the President and CEO of The Ehlers-Danlos Society, I am constantly reminded of the unique challenges and strengths that come with living at the intersection of these two communities. This blog post aims to share what being part of these communities means to me, the key message I wish to convey about my intersectional identity, and how these identities have influenced my medical care.

Being Part of the Rare Disease Community

Living with a rare disease like Ehlers-Danlos syndrome means being part of a community that often feels overlooked and misunderstood and can lead to a sense of isolation and a lack of awareness and resources. For me, being part of this community is about connection, support, and relentless advocacy. It means standing together with others who understand the daily struggles of living with a condition that many people, including some medical professionals, know little about.

The rare disease community is one of resilience and solidarity. We share our stories, support each other through difficult times, and celebrate the small victories that come with managing a rare condition. It’s a space where we can find understanding and validation, which is crucial in a world that often overlooks us. As someone who is deeply involved in advocacy work, I am committed to raising awareness, funding research, and pushing for better treatments and support systems for those affected by rare diseases.

Being Part of the LGBTQIA+ Community

The LGBTQIA+ community is another vital part of my identity. It represents a journey of self-discovery, acceptance, and pride. Being queer means embracing my authentic self and finding a community that celebrates diversity in all its forms. It’s about love, acceptance, and fighting for equality and rights for everyone, regardless of their sexual orientation or gender identity.

The LGBTQIA+ community, much like the rare disease community, is one of strength and resilience. We have a long history of fighting for our rights and challenging societal norms. This community provides a safe space where I can be myself without fear of judgement. It’s a place where we support each other through the challenges that come with being part of a marginalized group, and where we celebrate our unique identities and the progress we’ve made toward equality.

The Intersection of Rare and Queer

Living at the intersection of the rare disease and LGBTQIA+ communities adds layers of complexity to my identity. One key thing I want people to understand about this intersectional identity is the importance of recognizing and respecting the multifaceted nature of our experiences. Being both rare and queer means navigating a world that often fails to fully understand or accommodate either aspect of my identity, let alone both together.

This intersectionality brings unique challenges but also a profound sense of solidarity and purpose. It has taught me the importance of empathy, as I have experienced firsthand the struggles of being part of multiple marginalized communities. I want people to know that our experiences are valid and that we deserve the same respect, care, and attention as anyone else. It’s crucial to create spaces where all aspects of our identity are acknowledged and valued.

Impact on Medical Care

My intersectional identity has significantly impacted my medical care, often in ways that highlight the gaps and biases within the healthcare system. As someone with a rare disease, I frequently encounter medical professionals who are unfamiliar with Ehlers-Danlos syndrome, leading to misdiagnoses, delayed treatments, and a general lack of understanding of my condition. This experience is compounded by the fact that I am also part of the LGBTQIA+ community.

Healthcare professionals often lack training in LGBTQIA+ issues, which can result in discomfort, misunderstanding, or even discrimination in medical settings. For example, assumptions about our sexual orientation or gender identity can lead to inappropriate questions or comments, making an already challenging medical experience even more difficult. This intersection of rare and queer identities means that I often have to advocate for myself twice as hard to receive the care I need.

One of the most significant impacts of this intersectionality on my medical care is the need for comprehensive and inclusive healthcare education. Medical professionals must be trained to understand the unique needs of patients who belong to multiple marginalized communities. This includes not only knowledge about rare diseases like EDS but also cultural competence and sensitivity toward LGBTQIA+ patients. By improving healthcare education, we can work toward a system that provides better, more respectful care for all individuals, regardless of their background or identity.

Advocacy and Moving Forward

Advocacy is at the heart of my work and my identity. I am committed to raising awareness about the unique challenges faced by individuals who, like me, live at the intersection of rare and queer identities. This means pushing for more research and resources for rare diseases, as well as fighting for equal rights and protections for the LGBTQIA+ community.

One of the key goals is to create a healthcare system that is truly inclusive and understanding. This involves advocating for better training for medical professionals, increased funding for research on rare diseases, and greater awareness of the specific health needs of LGBTQIA+ individuals. It also means fostering a culture of empathy and respect within the medical community and beyond.

Conclusion

Being part of both the rare disease and LGBTQIA+ communities is an integral part of who I am. It shapes my experiences, fuels my advocacy, and strengthens my resolve to fight for a world where everyone receives the care and respect they deserve. My intersectional identity has brought challenges, but it has also given me a unique perspective and a powerful voice. I am proud to stand at this intersection, working toward a future where all individuals, regardless of their identities, can live healthy, fulfilling lives.

By sharing my story and advocating for change, I hope to inspire others to embrace their identities and join the fight for a more inclusive and understanding world. Together, we can make a difference and ensure that every voice is heard and valued.

See what others had to say during this session:

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers- Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness. Her passion is pushing boundaries and fighting for progression in Patient Engagement and Global Collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020, which commemorated ten years in the field of patient engagement and advocacy leadership. She is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events and academic lectures as an expert keynote speaker.

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