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30 Facts for World MS Day

May 30, 2018 is World MS Day, an opportunity to raise awareness about what living with MS is really like. We pulled together a list of 30 facts in order to spread the word and help others understand the day-to-day of life with MS. This year, we will also be giving away stickers to continue the conversation offline! To help increase awareness read on, share these facts, and enter to win two stickers!

What to know about MS

  1. There is no cure for MS yet.
  2. MS treatments, called disease-modifying-therapies, work to reduce the frequency and severity of relapses, but they do not cure MS.
  3. MS is an autoimmune disease, which means that the body’s immune system attacks healthy cells in the body.
  4. MS affects the central nervous system which is made up of the brain and spinal cord and controls the activities of the entire body.
  5. The cause of MS isn’t fully understood, but researchers have identified elements that contribute to developing MS, including genetic and environmental factors.
  6. Damage to the central nervous system can cause a wide variety of symptoms, ranging from pain to vision problems to muscle spasms.
  7. Many people living with MS experience relapses, which are unpredictable attacks or flares with new or worsening symptoms. They can occur weeks or months or years apart depending on a person’s MS.
  8. Relapses occur in two of the four types of MS: relapsing-remitting (RRMS) and secondary-progressive (SPMS). Those living with RRMS have periods of remission with few or no symptoms at all, punctuated by sudden exacerbations. SPMS begins as RRMS but transitions into a more progressive disease with fewer relapses or exacerbations. About 50% of people with RRMS eventually develop SPMS.
  9. Primary-progressive MS (PPMS) is another type of MS characterized by a gradual and steady increase in disability without distinct relapses and remissions. About 10-15% of people living with MS are diagnosed with PPMS.
  10. The fourth type of MS recognized by experts is called Clinically Isolated Syndrome (CIS) in which a person has a single MS-like attack to the central nervous system, with neurological symptoms. Some people with CIS may never have another attack, or they may go on to be diagnosed with another type of MS.
  11. MS symptoms can be mistaken for symptoms of other conditions, making it difficult to diagnose. In our 2017 In America survey, 42% of respondents were initially misdiagnosed.
  12. Diagnosing MS requires a variety of tools because there is no definitive test for MS. Some of these tools include magnetic resonance imaging (MRI), cerebrospinal fluid analysis from a spinal tap, blood tests, visual evoked potentials (VEP), and neurologic exams.
  13. Neurologists are typically the specialists that diagnose and treat MS.
  14. People with MS often have a larger healthcare team, including their neurologist(s), physical therapists, occupational therapists, nurses, and psychologists. Living well with MS is definitely possible, and a larger team ensures that all needs are being met.
  15. MS doesn’t just cause physical symptoms. Emotional symptoms like mood swings are common. Sometimes these mood swings are a reaction to the stress of living with MS, but other times they are caused by the effect of MS on the part of the brain that controls mood and behavior.
  16. Emotional symptoms go beyond mood swings. Our most recent In America survey showed that 53% of respondents experienced depression and MS, while 48% also experienced anxiety.
  17. Stress can make symptoms worse when those with MS experience high levels of physical or emotional stress.
  18. People of any age can be diagnosed with MS, but it’s most common in people between the ages of 20 and 50 years old. The average age of experiencing the first symptoms is between the ages of 30 and 35 years old.
  19. MS can affect both men and women, but it’s two to three times more common in women, as with other autoimmune diseases.
  20. Men with MS often experience more aggressive forms of the disease.
  21. People with MS can and do have healthy children, and pregnancy and childbirth do not make MS worse.
  22. There are 400,000 people officially living with MS in the US, but the true number of people is likely much higher and new data needs to be collected.
  23. Weather affects MS symptoms, so the heat of the summer or the chill during winter can be difficult for those living in more extreme climates.
  24. Even when a person’s MS is stable with no new disease activity, symptoms like fatigue can still affect quality of life.
  25. Many people with MS “look fine” on the outside, but struggle with daily tasks and activities due to their condition. MS is an “invisible illness” for many, and those with MS can fact discrimination from others who don’t understand.
  26. MS affects every person differently. Some people with MS can continue to work and experience mild to moderate symptoms, while others may use a wheelchair or be unable to work due to their condition.
  27. MS is often not the only health condition people are living with. In our 2017 In America survey, 88% of respondents reported other conditions.
  28. MS can have a huge economic burden on individuals and families living with the condition.
  29. The most common MS symptoms include fatigue, numbness and tingling, memory loss and brain fog, muscle spasms and weakness, heat sensitivity, bladder problems, pain, foot drop, vision problems, sexual dysfunction, and hearing loss.
  30. Sensory overload is another common symptom of MS, where loud conversations, crowds, bright lights, and frequent motions can exacerbate cognitive issues, leading to brain fog or memory issues or even painful headaches.

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