Blog Archive

Sunday, March 20, 2016

Reflections on the LGBT Community

I'm visiting my daughter at college, just for the weekend: enough time to realize how different things are when I went to college so long ago (one dorm specializes in "clothing optional" parties?), and also to enjoy young people and their passionate causes. Students here are crazy about Bernie Sanders, for one. And conservation, for another. 

And gay people rights. It made me think about our bleeding disorder community, and how the LGBT community fits in. Thirty years ago our paths were intricately woven, bound by the HIV holocaust. And now? What has happened? Justin Levesque, an articulate young man who is gay and has hemophilia, eloquently and thoughtfully writes about this topic in the February issue of PEN, shared below:

The Sum of My Parts
Justin Levesque

There’s a memory I have, from when I was about eight years old, riding in the backseat of my mother’s white ’91 Pontiac Grand Am. When “Goodbye Yellow Brick Road” came on the radio, I repeated an offensive and overtly homophobic joke about Elton John, the punch line lying far beyond my comprehension. Perhaps I had learned that making the joke was important, an unspoken rule. Perhaps I felt it necessary to mimic the way my father spoke while creating as much distance as possible between the unconscious truth about myself and Elton’s music, which blared from the radio.
            In later years, my mother would have to travel her own rocky path to reconciling the latent reality that her son was gay. But to her credit, in that moment, she steadied the wheel, disapprovingly whipped her head to look at me, and simply said, “Baby, that doesn’t matter when the music is so beautiful.”
            While my personal identity remained mostly dormant and unprocessed for several more years, there was never any escaping hemophilia, the medical identity that was genetically determined to be seen and heard. Born in 1986, I narrowly missed the direct impact of the HIV epidemic that swept the nation through the tainted blood supply. This was also a period in our community’s history that predated prophylaxis: treatment was given only in response to a bleed, and the punctuated relationship between a bleed and pain was intimate.
            These were formative years between a time of medical crisis and the promise of prophy. It was a place where resilience became an innate part of who I am, and when I first realized an acute awareness and responsibility for my body. And it is a place where I can still find inspiration from all who came before me, and take comfort in the forged path for all who follow.
            I never officially came out as gay or, as I now self-identify, as queer. Through adolescence, I embraced my medical identity as a person with a bleeding disorder. I accepted that there was indeed something different about me. My blood doesn’t clot, and striving to project that I was “normal” seemed utterly exhausting. Each summer, my classmates would drive to an overpass with a river underneath. I’d go along, but it felt easy to choose not to jump off the bridge, down the daunting 25 feet into the dark, shallow water. What was there to prove? Allowing my medical identity to be a part of who I am was the internal scrimmage in the process of organically becoming the sum of my parts, intrinsically woven. There was no need for an “out of the closet” announcement or to explain all the missed days of school. I refused to live anything but my truth.
            Of course, there have been obstacles along this journey of identity. But oddly enough, the most difficult hurdle to navigate so far has been within the hemophilia community itself. The lesbian-gay-bisexual-transgender-queer-plus (LGBTQ+, but more specifically, gay male) community and the hemophilia community have a deep and complicated historical entanglement that originated during their shared health crisis of the 1980s. At the time, both communities were just entering into what seemed like a period of liberation. LGBTQ+ folks were experiencing a newfound visibility in society while the advent of factor concentrate gave people with hemophilia fewer trips to the emergency room and the “invisibility” of home infusion. That golden age was short-lived, and these two groups of people, essentially strangers, became embroiled in the fight of their lives. Fueled by fear and biased media coverage, the only choice was for both groups to acknowledge the other in what would become a relationship that was publicly antagonistic yet quietly supportive.
            Some of the public antagonism cut deeply: people with hemophilia were portrayed as innocent victims of the epidemic. In response, LGBTQ+ activists rejected their presumed guilt, and proclaimed “All People with AIDS Are Innocent.” National Hemophilia Foundation established a “gay blood ban” in 1983. Meanwhile, hemophilia families looked beyond their HTCs to seek information and resources from LGBTQ+ HIV/AIDS support groups, and hemophiliacs themselves became activists.
            Michael Davidson writes, “Hemophiliacs, by association with a ‘gay-related’ disease, were subject to homophobia on the one hand and what one commentator has called ‘hemophobia’ on the other.”1 Ryan White, threatened and targeted himself, in many ways encapsulates this sentiment. Specifically, in the mainstream media, his image was in part responsible for desensitizing the stigma around HIV/AIDS, but it also—despite Ryan’s consistent rejection of the criticism of homosexuality—created distance between hemophilia and the LGBTQ+ community.
            When it comes to being gay/queer and having hemophilia, it can sometimes feel like these two key parts of my identity are in conflict. This, in turn, never fails to take me by surprise, given how important each was to the other in my coming-of-age tale. And, as I would learn during community events, that conflict inside me was not unwarranted. In 2014, after moderating a rap session for LGBTQ+ people with bleeding disorders, I was questioned on the validity of holding such a session. Then I was asked, “Why are you trying to bring AIDS back into our community?”
            Even with the amazing progress toward equality we’ve seen in 2015, it’s clear there is still a wound to be healed among us.

Justin Levesque holds a BFA in photography from the University of Southern Maine, with a specialization in the critical analysis of images and their impact on social norms and community expectations. He lives in Portland, Maine, and runs his own design studio, Shop Geometry. Justin serves on the board of directors for Hemophilia Alliance of Maine and runs a group of programs called FOLX (folxfolx.org) that celebrate arts and creativity in the bleeding disorder community.
For more information on the LGBTQ+ community, please visit http://www.glaad.org/reference/lgb or thesafezoneproject.com.

1.     Michael Davidson, Concerto for the Left-hand Disability and the Defamiliar Body (Ann Arbor: University of Michigan Press, 2008), 41.




Sunday, March 13, 2016

An Inspiring ELOCTATE Story


The famous Nigerian poet and novelist Ben Okri wrote, “Stories can conquer fear, you know. They can make the heart bigger.” In this week’s blog, a young mother shares her personal story about hemophilia, about overcoming fear, handling her emotions and learning about a therapy that could work for her family. She shares her story, to help others facing the same fears. We hope to bring you more such stories throughout the year.

Thanks! Laurie

Indications ELOCTATE is an injectable medicine that is used to help control and prevent bleeding in people with Hemophilia A (congenital Factor VIII deficiency). Your healthcare provider may give you ELOCTATE when you have surgery. Important Safety Information

Do not use ELOCTATE if you have had an allergic reaction to it in the past.


My name is Sara, and my 8-year-old son Evan has severe hemophilia A.

The circumstances surrounding Evan’s diagnosis are likely familiar to many other families in the community—a standard heel prick that wouldn’t stop bleeding, eventually soaking his newborn clothes. I remember the nurse quickly whisking Evan down to the nursery, and I watched as three, four, then five nurses dropped what they were doing and frantically tended to our baby over the course of the next hour. The doctor finally told me he suspected Evan had a bleeding disorder and gave a very brief description of hemophilia.

This was not the life I had envisioned for my family.

Fast forward sixteen months later—I had studied every pamphlet and book and memorized signs and symptoms of every possible bleed like it was my job. I kept on top of appointments and diligently brought Evan to the ER each time he knocked his head. And then it happened, my greatest hemophilia fear: a spontaneous head bleed. Hearing things like, “subdural hematoma, evaluate the need to drill, lucky to be alive,”—all of it was so surreal. I felt helpless watching my innocent 16-month-old fight for his life.

I somehow found it in myself to channel that fear and anger into fuel for managing Evan’s hemophilia. I forced myself to attend social events and conferences, and ended up making a great handful of friends who have become a part of my hemophilia lifeline. At doctor appointments, I began to ask questions without censoring myself in order to get answers I could understand.

I also began researching treatment options. By learning about ELOCTATE myself, I was able to work with my doctor to find the answers to my lingering questions, evaluate the risks and benefits, and make an informed, educated decision with our physician to see how Evan would respond to it.

Evan has been taking ELOCTATE for his severe hemophilia A since August 2014. He does typical 8-year-old things like riding his bike, running, or playing sports with his cousins. They’re boys so they want to tackle and hit. Now he knows he has to play two-hand touch and with the Nerf ball. His cousins have grown up with him so they’re used to it. They’re attitude is just, “Okay, cool. Let’s go play.”

Since starting on ELOCTATE, he hasn’t had any spontaneous bleeds. And he’s becoming more receptive to being involved in his own care.

I’ll always be a protective mom, but it means so much knowing I can count on ELOCTATE to help care for Evan’s hemophilia. I am not only grateful for the opportunity to share my experiences as a caregiver of a child with severe hemophilia A, but also to provide some wisdom, and, hopefully, some inspiration to a unique, capable, and fantastic community of people.

You can see more about Evan and me in our video here  on the ELOCTATE website.
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Talk to your healthcare provider about whether ELOCTATE may be right for you. Please visit www.ELOCTATE.com to read the Indications and Important Safety Information , as well as the full Prescribing Information .
ELO-US-0880 02/16

This blog was sponsored by Biogen, for educational purposes.

Sunday, March 06, 2016

The Education Advantage!

Our community is fortunate to have many different scholarships. In fact, LA Kelley Communications had the first on-line listing of scholarships for the bleeding disorder community! That’s how much I believe in a higher education. Take advantage of what the community is offered! Learn about Education Advantage below! 
Laurie 

Education Advantage - Scholarships for our Community brought to you by Baxalta 

Since 2010, Education Advantage has awarded more than 200 scholarships to US students with bleeding disorders. 

The scholarship program has grown! New for 2016, those with von Willebrand disease are invited to apply! The program continues to be open to hemophilia A, hemophilia B, and inhibitor patients. Education Advantage is open to US students, regardless of which brand of treatment used. 
Education Advantage offers three different scholarships to eligible applicants: 

University Scholarship:  
       Up to $7,000 for students working toward their bachelor’s degree 
       Renewable for up to 3 additional years 

Community College and Technical Scholarship 
       $1,000 for students seeking an associate’s degree or a technical vocational certificate 
       Renewable for up to 1 additional year 

GED Assistance:  
       One-time $150 reimbursement if you pass the GED test 

Get started on your application today at www.BaxaltaHematology.com/EA 

The application period for 2016 is open now until April 30. You can find more details about the scholarships, meet the previous year’s winners, and find out how quick and easy it is to apply at www.BaxaltaHematology.com/EA


This message is supported with funding from Baxalta
USBS/MG1/16-0041 
 
Bayer