3:35
- wellness
- March 30, 2022
What to know about multiple sclerosis and women
The disease is three times more common in women, the National MS Society says.
3:35
Adding to the difficulty of diagnosing MS is that symptoms may start and then fade away and later return, or in other cases they may develop gradually over many years. The four main types of MS are named according to the progression of symptoms, according to the NIH.
With relapsing-remitting MS, the most common type of the disease, symptoms occur in attacks, called a relapse or exacerbation, followed by a period of remission that may last for weeks, months or years, according to the NIH.
People with secondary-progressive MS have usually had a history of MS attacks and their symptoms and ability to function worsen over time. In the two more severe and rare forms of MS -- primary-progressive MS and progressive-relapsing MS -- people's symptoms worsen from the beginning, with no remission, according to the NIH.
There are no specific tests that diagnose MS, which means doctors often rely on ruling out other conditions with similar symptoms. MRIs can also identify lesions on the brain and spinal cord to help diagnose MS.
\"It's really hard because I think for an individual, the sooner you pursue diagnosis, the longer you have to live with seeing your body in your life through this new lens,\" said Shah. \"But from a medical standpoint, that allows us to start high efficacy-medication early so that we can prevent downstream disability.\"
There is no cure for MS, but there are medications now available to help delay the progression of the disease and to decrease the frequency and intensity of symptoms, according to Shah.
\"I tell people when I diagnose them, the way that they look on the day they meet me, that's the goal, no more disability,\" she said. \"And we have really good medications that get us pretty close to that these days.\"
What Blair, Applegate and Sigler have done in speaking out about their battles with MS is to put names, faces and experiences to what advocates and patients describe as an \"invisible disease.\"
\"Despite the fact that an estimated million people live in the U.S. with MS and that three-quarters of them are women, so we're talking about 750,000 women, it is a very invisible disease in many ways,\" said Julie Fiol, associate vice president of healthcare access for the NMSS. \"It's invisible in that people aren't aware of it, don't quite know what it is when they hear it, and because the symptoms can be invisible.\"
When Moyna John, a 30-year-old mother, was diagnosed with MS over two years ago, she said even people closed to her struggled to understand her illness at first because she wasn't in a wheelchair, for instance.
\"Some people close to me were like, 'Well, you look fine,'\" recalled John. \"People within the chronic illness community in general hate hearing the, 'but you don't look sick' phrase, because it's not a compliment. We are sick.\"
John, of Queens, New York, said that aside from the physical symptoms she deals with as part of her MS battle -- from brain fog and fatigue to blurry vision and pain -- there is a constant mental health struggle as well.
\"This diagnosis came and completely derailed me. I was super depressed trying to figure out what life would be like now and how I would be an adequate mother and adequate wife and all these things,\" said John, whose son is now 4. \"I still deal with a lot of depression, a lot of anxiety, and that's something that I have to navigate on a regular basis.\"
![\"PHOTO:](\"http://a.abcnews.com/images/GMA/moyna-ht-er-220329_1648578710723_hpMain_4x3t_384.jpg\")
John said that part of her acceptance of MS has been her work to make the disease less invisible for others, particularly for Black women.
\"When I started to look into it, I thought this doesn’t seem to be something that affects women that look like me ... I didn’t see young mothers. I didn’t see Black people at all,\" she recalled. \"I went to a support group and everyone was older, everyone was white, their symptoms were a lot more severe, and it kind of sent me spiraling.\"
John began to share her journey on social media, where she said she found that, \"Having some sort of community is beautiful.
\"I feel like a lot of people don’t realize how much having someone who looks like you matters. It can be really isolating, feeling like you’re the only person dealing with this,\" she said. \"I think me sharing about me being a mom kind of helps people to think, wow, you can live a life that is busy and still exist.\"
Likewise, Hines said she found so much support from the online community of people with MS that she started a YouTube channel, Marti's MS Life, to document her own journey and create another space for women to talk openly.
\"Most people can’t really understand what it means to be in pain every second of every day. Not being able to understand that makes the sick person feel even more isolated. You don’t want to be the person who has the cloud over them,\" said Hines. \"Everyone asks how you are and you just say, ‘I’m fine,’ because you probably wouldn’t talk to me anymore if I told you how I was.\"
Sarah Wolfe, a 37-year-old mom of 2 in Los Angeles, was diagnosed with MS three years ago, just after her oldest child's first birthday.
She said that because people can't physically see her MS symptoms, like pain and fatigue and vision loss, she makes sure to talk with friends, family, colleagues and strangers about the disease.
\"It may be counterintuitive to people, but I kind of wear it as my badge of honor,\" said Wolfe. \"I'm very transparent about it, like, 'I'm Sarah and I have MS,' and I don't tell people to feel bad, it's more that I just want people to know.\"
![\"PHOTO:](\"http://a.abcnews.com/images/GMA/gma-sarah-ht-kk-220329_1648601621466_hpMain_4x3t_384.jpg\")
Wolfe said she also talks openly about her MS because \"the burden is too great to do it on your own.\"
In addition to her current physical challenges, she said she quickly goes to \"dark places\" mentally worrying about the future and how MS will continue to affect her brain and body.
\"I feel like if I had stayed quiet about it, it would have done something to me in a negative capacity mentally,\" said Wolfe. \"What’s helping me stay positive is to talk about it, to be supported.\"
![\"PHOTO:](\"http://a.abcnews.com/images/GMA/gma-sarah1-ht-kk-220329_1648601621465_hpMain_4x3t_384.jpg\")
She continued, \"I just never want the MS to beat me. That’s my goal. I’m very adamant about that. It won’t be the only thing that’s left at the end of day.\"
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