Guide for those Black and Newly Diagnosed
Multiple Sclerosis is an autoimmune disease that disproportionately affects Black people. However, with the right education and skills, you can live a full, healthy, and active life with MS.
Up until recently, MS was treated like a "white woman's disease" - often making Black people feel isolated, or worse, undiagnosed and unheard. Today, we know that Black populations have an increased risk for earlier and greater disability from MS. It can feel like the healthcare system is set up against you, representation is lacking, and the search for people you can relate to is an ongoing struggle. The resources below were created for you to educate yourself on your disease and learn tips on receiving the best care so you can live well with MS.
The videos below include:
- What Your Diagnosis Means and What You Can Expect
- How MS Affects the Black Community Differently
- Ways to Manage Your Symptoms
- What is Self Advocacy and Why is it Important?
- Tips for Building a Strong Relationship with Your Doctor
- How to be a Prepared and Pro-Active Patient
Dr. Mitzi Joi Wiliams
"I think one of the biggest difficulties that I've seen as an MS specialist is that many of my patients don't recognize that they have a voice. They have a say. They are part of the healthcare team."LISTEN
"When I looked at my MS diagnosis, to get down that path of finding my voice, [I realized] my MS diagnosis is unique. Why? Because there's never been another Tyler Campbell, and no other voice can tell or share it or walk through it like I can."LISTEN
Victoria Reese is Co-Founder and CEO of We Are Ill, a nonprofit organization for Black women with MS that provides support, sisterhood, and a space to learn from one another. "By being as knowledgeable as possible about your illness, you can be an active decision-maker in the healthcare setting, and one day feel empowered to say I have MS but MS does not have me.”LISTEN
"It's part of the culture, this wariness of the medical profession for various well-documented reasons for hundreds of years...However, I'm the type of person who needs results, needs answers, now. I will go to whatever to get them. So...history was unimportant to me. I was going to get answers and facts, and the only way I was going to do that was if I went after them strong and confidently."WATCH
Read more on why inequalities in MS exist and strategies you can use to overcome them.
These Conversation Starters can help when you're not sure what to say
We Are Ill