2020 has been unbelievable for us all, and in the words of Kaila Lipford, “COVID-19 has not been the worst of it. As race riots and protests take over our nation, we’re now reminded of how far we still have to go as a nation. There is still a lot of work to do in the fight for equality and justice.”
Although June is Scleroderma Awareness Month, Kaila believes “every month should be Racism Awareness Month. I say that because while I now have a scleroderma battle to fight, I still also have a race battle to fight and it’s helpful to know that the scleroderma community stands with every black person facing this disease.”
As a Black woman, Kaila says racism has permeated every part of her life in this country. Sadly, she’s experienced it in multiple ways, but the first time she remembers experiencing racism in a medical setting is when she received her scleroderma diagnosis in April of this year. The doctor was dismissive. Rude. Abrasive. Short with her questions and devoid of helpful answers.
“This was before the racial tension and riots. This was before America could say out loud that we still have a race problem. This was just myself and a non-Black rheumatologist giving me my diagnosis and being dismissive and short with any questions that I had.” Kaila says, “Some might argue that since I have no proof, I should not say it was racism. However, if I was able to film the way I was treated then it would clearly depict racism. Fast forward to today and the camera showing George Floyd & Ahmaud Arbery’s senseless murders shows us that racism is still a major problem and unfortunately there is not a camera present for every racist act.”
After her diagnosis, Kaila took to Google to find the information she wasn’t able to receive from her doctor. Online, Kaila was met with stories and images of white or non-Black people who had scleroderma. Kaila says while that was okay to see, “It just helps to see other Black people because you feel you can better relate because they may share close to similar experiences as yours.”
With this in mind, Kaila decided to share her story and be a face of scleroderma. She shared her story to her YouTube page, “Soul Trip,” and in doing so, confirmed what she thought to be true: there were other Black people looking to see faces like theirs to understand the disease more.
Kaila was contacted by a Black colleague whose mother passed away from scleroderma when she was young. The colleague expressed that “me sharing my story was very inspiring and helped her relate to what her mother might’ve gone through with the disease.” Kaila also shared her racist encounter with the doctor, and she and her colleague discussed how the disease might’ve affected her mother navigating the health care system over 20 years ago as a Black woman. She says, “We knew then that her mom had even less information and probably very few places to see a Black face with Scleroderma.” Fast forward to today, and Kaila is very proud to be a Scleroderma Aware advocate, especially so “any Black person who faces this disease can see another Black face fighting, too.”
To follow Kaila further and hear her story, visit: