Photo: Robyn Kebede, left; Ashley Lacy, right.
In a recent interview with HFA Education Manager Robyn Kebede, Board Member Ashley Lacy shares her lived experience as an African American Woman with a Bleeding Disorder.
Ashley, can you share your journey living with a bleeding disorder as a Black person?
Life as a black person brings its own set of challenges however, living with a chronic illness can add an extra layer of challenges. Some of these challenges include having to work extra hard to advocate for your needs and sometimes feeling unseen and unheard by providers.
Have you faced any unique challenges in accessing care or treatment?
Yes, although I live in an urban area, there is no HTC in my area. There is a great need for it, but we have to either travel to be treated or see providers who are not necessarily focused solely on bleeding disorders and that can make treatment and proper care difficult.
What changes would you like to see in the healthcare system to better support Black patients with bleeding disorders?
A safe space for people to share their struggles of being black and living with a bleeding disorder. Additionally, an acknowledgment of the challenges that people with bleeding disorders may face which can be different from other people.
How has your cultural background influenced your approach to managing your condition?
I was diagnosed at 6 years old and although that was really early for a VWD diagnosis, within my family, nose bleeds were “normal.” It took someone outside of my family which was my 1st grade teacher and the parent liaison at my school to bring awareness to my family to say hey she may need to be further evaluated because something is not right here. So, although my mom was very attentive to my needs and health, nosebleeds were just a family thing that was no big deal for us, and I think that can be a cultural influence in our approach to not only bleeding disorders but other health issues as well.
How can advocacy organizations such as HFA better support Black individuals with bleeding disorders?
I think hearing us and seeing us is so important. A lot of times when black people are in the room discussing bleeding disorders, they may be the only person in the room who looks like them and that can sometimes be intimidating but hear us, see us, know what our stories are valid. Our stories may sound different than others but that does not make them less valid and trust us. Especially black women, we have to go even more above and beyond to be seen and heard so listen to us, empathize with our struggles but do not assume that you understand them thoroughly.
What resources or programs exist to help educate and empower the Black community about bleeding disorders?
I am not sure about this, but I would love to know if some exist.
Why is it important to highlight Black voices in the bleeding disorders community?
Thank you for this opportunity to share a small piece of my story. This is important because we all learn from each other and it’s important for us to recognize that everyone’s struggles and stories are different and while we may be able to relate to one another in the aspect of a bleeding disorder, that is something that we can sometimes disguise. Most people can’t look at me and see that I have a bleeding disorder. However, one thing they will always see is that I am a black person and as previously stated, being black brings its own set of challenges on top of living with a bleeding disorder. Therefore, when we keep our hearts and minds open to learning more about other people, we can be better advocates for one another and continue to make meaningful connections.
HFA would like to thank Ashley Lacy for sharing her perspective with the organization and the public.
If you are an African American individual who would like to share your own lived experience with a Bleeding Disorder, please reach out to Robyn Kebede.
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