Portions of this post appeared during 2018’s MS Awareness Month. I have updated to reflect new information.
What is Multiple Sclerosis?
Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.
Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair.
There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):
- Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
- Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
- Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.
Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:
- People between 20 – 50
- People further away from the equator
- Women are 2 – 3 times more likely to get an MS diagnosis
- Parent or sibling diagnosed with MS (~1-3% chance)
- People with low vitamin D levels
- People who had mononucleosis or another virus linked to MS at one point in their life
- Already diagnosed with one autoimmune disease
It is estimated that around 2.5 million people globally have the MS diagnosis.
- Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
- No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
- Start that family if you want. If you are
physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
- No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis
. Myheart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.
- You can look and be
glamourousdespite an MS diagnosis. Just look at Selma Blair at this year’s Vanity Fair party. Using a walking device can double as a fashion accessory and wearing gowns can be a more common occurance. MS does not have to take away your sense of style.
An Invisible Disability
MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.
But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.
Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.
My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.
He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.
It was a humiliating experience. And I have been fortunate not to experience anything like it again.
Will there be a Cure?
At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure.
- Dr. Metcalfe has found a way to stop the body from attacking itself and help the body repair itself
- Reprogramming of certain patient cells to help repair the damage done by MS
- Hitting MS with early intensive treatment may help treat MS more effectively
There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.
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