The Literally Invisible Symptom
Last updated: March 2022
When your skin is dark, you miss out on an important multiple sclerosis symptom. Itchiness caused by a rash is not uncommon. There are many types of rashes with myriad causes. Some are related to detergent or physical contact with a disagreeable fabric. However, one thing remains the same. If you are a Black person on the darker end of the spectrum, you will find it nearly impossible to see your skin reflected in rash photos. You may also encounter healthcare providers or dermatologists who are unfamiliar with how rashes present on dark skin.
Rashes are a part of MS for many people
A paper published by the Cleveland Clinic lists rashes as one of the side effects of some disease-modifying treatments (DMTs).1 This means that if I am having a bad reaction to a specific medication, a rash could be part of that. Yet, when I go to try to compare my rash to representative photos, I cannot tell. Photos show color, scale, size of bumps, scale colors. Photos contain all of the visual clues needed to see if this rash is worth making an appointment. While diagnosing a possible reaction or disease by using Google is not advisable or medical advice, being able to check it out can be a useful tool.
The lack of representation for dark skin goes beyond MS
The issue of lack of representation in dermatological photos is not unique to MS patients. There are thousands of stories about Black patients who were unable to receive proper rash care simply because their doctor did not know how a certain rash looked in darker skin. For many years, advocates have been looking to change things. The paucity of resources often starts in medical school.
A gap in medical school education
Dr. Lynn McKinley-Grant, a dermatology professor at Howard University says, “Often in medical schools, they have limited pictures of diseases in skin of people of color.2 For me, this has meant forgoing doctor’s appointments. It is feeling like there is no point in going. Of course, there is the suggestion of looking for specialists who are familiar with dark skin. However, their numbers are small and they typically have focused practices that are unavailable. It might be a distance issue or an insurance issue or money. I want to have the same experience and access to resources as my MS peers.
New resources built by the community
When she was unable to find dermatologist photos that would help her son, Ellen Buchanan Weiss started the Instagram page BrownSkinMatters (@brownskinmatters).2 On this page, you will see various skin conditions and the way they can look grey on darker skin. At times, they appear fairly similar to those with lighter skin. Most of the time, the subtleties in tone, color, and texture are enough to make the difference between one skin problem and another.
Keeping an eye on the future
While BrownSkinMatters is helping to address the problems of today, eyes are also on the future. Now that Artificial Intelligence is a reality, it is even more important to embrace diversity. If the computers are only fed data and photos from those available today we will see the problem compounded.2 Those photos are based primarily on white males since those types of photos are the biggest type. Just as there are physicians changing things at the medical schools and regular people are creating visual data sets, there are those with an eye on making sure that yet future does not replicate the past.
What all of this means for me is that my dark skin will not keep me at a disadvantage and that I will have another tool in my war chest against multiple sclerosis.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: