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, Daniel Price, had to say:
“Friendship is born at the moment when one man says to another, ‘What! You Too? I thought that no one but myself…’” These words written by author C.S. Lewis reflect the sense of uniqueness and isolation many of us with a rare disease experience. It also expresses the joy and affirmation that comes when we learn that we are not the only one. Lewis has also said that “friendship gives value to survival.” It is a form of love that provides emotional support for those who share a similar life’s journey, and it gives meaning to our existence.
My name is Daniel N Price. I live in the greater Seattle/Tacoma, Washington, USA area and currently work in aviation at the Seattle airport. When I was three years old, I was adopted from China to the USA. I also have three other adopted siblings, one other from China and two from South Korea. I live with a rare disease called TSC (tuberous sclerosis complex), a genetic condition that causes benign tumors to grow on vital organs. This condition can include a wide variety of other complications, such as skin problems, seizures, learning disabilities, a spectrum of neuropsychiatric conditions, and more.
In addition to being a Chinese adoptee with a rare disease, I also identify with the LGBTQ+ community. For many years, I felt as if I was the only one alive who had been placed at the center of these three intersecting and underserved communities. My feelings of isolation and lack of understanding within the educational and healthcare systems were overwhelming. Although they did their best, my adoptive family did not have the resources or skills to navigate the many challenges I encountered as a member of these three communities. It has been, and still is, an ongoing struggle to get the accessibility and workplace accommodations I need.
I am often asked about how being an adoptee or a part of the LGBTQ+ community affects my medical care. There are two key areas that I continue to advocate for. The first of these is the fact that I have no family medical history. But I am constantly asked about it and that is something that causes me a great deal of sadness and emotional pain. If I could offer one suggestion for the medical community, it would be to incorporate a standard question on any admission forms. That question would be: “Do you know your biological family’s medical history? YES or NO. If “No,” do you wish to discuss this with your Medical Provider? YES or NO.” And then, beyond that, to tag medical charts so that information is clearly seen in the computer record or on the front of a chart, and not buried within the record. This would go a long way toward demonstrating empathy and understanding for an adoptee who has no known medical history.
The second area where I see a great need, particularly within my TSC community, is medical and support services for adolescents transitioning to adulthood. There was not much available to me when I left high school, when I began looking for work that would be compatible with my health limitations and learning disabilities, or when I needed support and recognition as I became aware that I identified with the LGBTQ+ community. Most specialty clinics for TSC are pediatric clinics. Even now, in my 30s, my specialist medical care is through the Cincinnati Children’s Hospital TSC Clinic. While I feel that I get good care for my medical concerns, much more could be done to support the social, emotional, and psychological needs of adults with rare diseases.
Over the years, I found that I needed to become my own advocate and to learn how to manage these three unique areas of my life. I have only met two other individuals who share a similar path. Meeting them through various organizations that separately support adoptees, people with TSC and other rare diseases, and the LGBTQ+ communities provided the connection and understanding I needed. I could now say, “I’m not the only one!” The three of us are at different stages of our lives; one is younger and one is older than I am. I think this has given us the ability to share our perspectives in many ways, and to provide a helping hand when someone is struggling with something others have already been through. This experience empowered me to want to find others who might also identify with our three communities and to reach out with the friendship and understanding that can make a difference in their lives. So many good things have come to me from joining these communities. I have been blessed to work in the aviation industry where my travel perks allow me to travel all over the world. My life has been enriched by being able to attend events in many different countries where I can volunteer, advocate, celebrate, and raise funds for the organizations that have supported me. I have made lifelong friends in places as far away as Singapore, China, Australia, New Zealand, and Europe, as well as in many states here in the U.S. I look forward to continuing to empower and inspirer myself and others as part of the communities I identify with. I have learned that there are many people who may not share my unique situation exactly, but there are many who are willing to listen to my story and to share theirs. We become friends when our search for common ground allows us to feel understood and validated. We realize that when we are with that person, we are no longer a label. We might not have similar stories and our medical and cultural experiences may be quite different, but at heart, we learn that we are very much the same. We can find acceptance and understanding despite our differences.
In a 2020 study at Oregon State University by Brooke Bryson and Dr. Kathleen Bogart, both “companionship support” and “emotional support” were found to be the strongest predictors of life satisfaction for individuals with rare diseases regardless of the amount of stress they were experiencing. For me, this suggests that it is important to reach out in friendship as C.S. Lewis suggested. We need to listen to each other, share activities and experiences, agree to disagree on some things, but continually look for the understanding that allows us to say, “I’m not the only one.” For me as a member of the Adoptee, Rare Disease, and LGBTQ+ communities, it means that we need to keep advocating for our underserved groups and stand united in our efforts to improve each other’s lives. Pride is celebrated all over the world during the month of June. I believe we can celebrate our pride in each other through kindness and friendship throughout the year.
The Oregon State University Research Summary and Recommendations
by Daniel N Price
Seattle/Tacoma USA
Adult Reginal Coordinator West TSC Alliance
ICAV (Inter-Country Adoptee Voices) USA Rep
See what others had to say during this session:
Daniel Price currently resides in the Seattle/Tacoma area. He was adopted from Mainland China at the age of 3. Daniel has one other sibling from China and two from South Korea. He also is currently living with a rare disease called Tuberous Sclerosis Complex (TSC), mildly impacting his day to day life. He is often referred to as “the one who was adopted and impacted by a rare disease”. Daniel is currently working in aviation, and has found a calling in advocating for the rare disease/ disability and the adoptee community to collaborate and work together to support those affected globally. Daniel is an avid traveler.
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