Changing the world for people affected by MS since 1946 — during MS Awareness Week 2021 and every day.




Wesley
Wesley
Taekwondo (Purple Belt). High scool student. Diagnosed in 2015.

One day, my parents noticed my right arm didn’t swing when I walked. They brought me to the hospital, and after an MRI and spinal tap, I learned I had multiple sclerosis. I was 13 years old.

At first, I thought it was a prank or something because I had never heard of MS. Once I realized I had a disease that couldn’t be cured, I went through kind of a depression.

Kids my age don’t always care that much about others, but my friends that did care asked questions so they could support me. My parents have come to every hospital visit since my diagnosis, and I learned they’d be there for me through anything.

With the support from friends and family and the right disease-modifying therapy, I realized that I’m still me and could move forward with my life.

Now, I’m your average 17-year-old. I like playing video games and sending Snaps to my friends. But being diagnosed with a chronic illness at such a young age has changed me.

I used to be very active and play basketball, but now I have to sit on the side and not let fatigue get the best of me. So, when my mom suggested I pick up another sport, like Taekwondo, I thought it would be a good way to get active again. I’m now a purple belt, hoping to get my black belt. Taekwondo has really helped me because even though I still have this disease, I can get on with my life to the best of my abilities.

Ever since I learned I have MS, I have realized everyone has their own battles. I think it is important for other people to know that that while some people may seem okay on top, there might be something deeper within them. I joined a support group for youth living with MS where we share what it’s like to not have people understand this. But I think I’m stronger than a lot of kids my age because I’ve gone to the hospital so many times; I’ve gone through the shots and treatments. I’ve fought this disease.

Right now, I’m just enjoying my last year of high school. I hope to get into college and major in hospitality and management. MS doesn’t even fit into that. I'm just thinking about pushing through. MS is not really on my mind all the time – I’m too busy living.

Anotnia
Antonia
Leader. Equestrian. Diagnosed in 2017.

I was a 27-year-old, very active equestrian when an emergency room visit changed my life. I fell off my horse and three weeks later, I was still feeling numb. I thought I might have a pinched nerve, but an MRI revealed I had multiple sclerosis.

I got progressively worse. I wasn’t able to walk, and my left arm stopped working. I had to stop riding for about a year.

The hardest part about having MS is not being able to explain how you feel. I wish I could write I have MS somewhere on my body because people are so judgmental when they can’t see my invisible symptoms — just because I’m not in a wheelchair doesn’t mean it’s not hard for me to walk every day.

After I was diagnosed with MS, I got a handicap pass. One day, I was with one of my friends and I actually felt really good because although I had a little bit of a limp, I wasn’t using a cane that day.

I pulled into a handicap spot and the parking attendant looked at me and said, ‘You’re obviously lying. You’re not handicapped.’

I called my mom hysterically crying. I was so embarrassed.

MS has taught me that you don’t know what someone is going through.

MS is inconsistent. MS does not discriminate, and it’s not specific. It doesn’t say, ‘Here’s your disease and here’s what’s going to happen to you.’

Visible and invisible symptoms come and go. It’s hard to explain to your friends that last weekend you could do something, but this weekend you can’t. Just because I can ride my horse one day, doesn’t mean I’ll be able to ride next week.

But I’m so lucky. My entire family – my Papa, my Mama, Brandon, Devon, Joseph and Aunt Myrna - and friends are all amazing. I have a doctor who listens to me. I have choices when it comes to my medication.

I’ve found an amazing support system in the National MS Society. I’ve found a way to make a difference.

These have been the hardest two years of my life but also the most rewarding because I now have a new sense of who I am.

I’m the best version of myself because I don’t have a choice.
Victoria
Victoria
Advocate.
Co-founder of We Are ILL.
Diagnosed in 2012.



I was a healthy 25-year-old who had just moved to Los Angeles to start my career in a fast-paced Hollywood talent agency. When my legs started randomly falling asleep and making it difficult for me to take the stairs, I went to see my primary care physician.

He attributed the numbness in my legs to the stress of my career and prescribed me antidepressants. I didn’t think I needed medicine to change my mood, but when something is happening that’s so different, you just listen to your doctor.

After the numbness spread to my face and I experienced an excruciating migraine, I went back for an MRI of my brain and spine. The MRI showed lesions in my brain and combined with my symptoms, my doctor felt it was multiple sclerosis.

Being a primary care physician, he didn’t have any literature about MS. He handed me a few pieces of paper stapled together to tell me about the rest of my life.

I immediately felt like I had no control – what if I end up in a wheelchair? If I have kids, what if what just happened to me happens to my baby?

I didn’t know what MS was apart from hearing it from a childhood friend, and the diseased seemed to affect older, white women. I was young, Black and felt like a unicorn for having MS.

Now, almost 10 years later, a lot has changed. I am now mother to a beautiful, healthy baby girl and an advocate for patients.

Looking back, the moment of diagnosis is crucial. No one tells you that you need to brace yourself to become an informed patient. If you’re a healthy person who doesn’t really go to the doctor, whatever doctors say, you just listen. But once you become a professional patient, you start to understand that you should advocate for yourself. You have to be knowledgeable so you and your doctor can work as a team. Living with this illness, you have a relationship with your body where you’re always learning. Yes, I trust my doctor… but I trust myself, too. I know my body.

Getting involved in patient advocacy work, I began to speak with Black women and was blown away when I heard the same story over and over again — they had never met another Black person with MS. There were so many people who felt the same way I did.

I started We Are ILL as an awareness campaign on social media and an online support group to help others feel less “rare.” We Are ILL is now an organization with a support group that has grown tremendously. Black women can search for us and think, “I see myself.”

We need to see that Black women get MS, too. And there’s still more work to be done. Together, we can change the narrative of what it means to live with MS.




"Multiple sclerosis may be a part of who you are, but it doesn't define you." Every day, people do whatever it takes 
to move their lives forward despite MS.





Yvette
Yvette
Mom.
MMA official.
Diagnosed in 2014.


My name is Ausjia. My mother, Yvette, has always lived a life dedicated to serving her community and looking out for other people. Most importantly, though, she has lived her life for her children. Yvette raised my brother and I as a single mother, working long hours with countless nights without sleep. She always did whatever it took to make sure my brother and I were taken care of.

My mother was diagnosed with multiple sclerosis nearly four years ago. I have watched this disease take its toll on her body and her mind, but what it hasn't been able to do is damage her fighting spirit.

She's had six MRIs in 10 months and for three of those, they told her she has new lesions on her brain. She smiled and said, "At least I'll be safe during the zombie apocalypse. They don't want my brain!" She even cracked jokes around the pain with a needle sticking out of her back during her spinal tap.

From muscle weakness to blurred vision, to pain and extreme fatigue, she's told me that sometimes it feels as though this disease steals the very things that make her feel like a person. Staying positive when you can't accept hugs because your whole body hurts is a challenge. Smiling through the memory loss and brain fog when you forget your children's names or wonder why you put your cell phone in the refrigerator is a daily chore.

She started her years of service in Girl Scouts, and has never been afraid to get her hands dirty to help someone in need or for a worthy cause. She's worked as a substitute teacher for almost 10 years, focusing on at-risk students at continuation schools.

Now she also works in the mixed martial arts world, constantly seeking to improve it and always making it a priority to ensure the safety of the fighters under her care. Many fighters refer to her as their MMA Mom because of the personal care she shows to everyone who crosses her path; they are all her babies.

Despite all of the pain and fatigue she has endured, my mother never stops trying to make a difference in people's lives. Sometimes, I think she forgets to slow down and remember the impact that MS is having on her own body.

Let's move forward together.

Start here.