MS in numbers

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Because not every country has a MS register yet, it is difficult getting exact figures about how many people have MS. This means that some figures are estimates only. While the numbers below (taken from different websites), may sound frightening, it’s important to focus on the good.

When I talk to people who don’t know the details yet about their new illness, I always refer to the “non-scary wheelchair number.” Instead of going into the possibility of ending their life in a wheelchair, I refer to the opposite side of the scale. When they say “But 25% of people with MS will end up in a wheelchair!” I say “Perhaps, but that means that 75% of people with MS will not end up in one at all!”

So when you go over the figures, keep this tactic in mind. I will update this list as time goes on and more numbers are updated or new ones released. Consider this a work in progress so and please feel free to email me when you find new websites with MS numbers.

The main (and best!) web page to find more numbers, is the MS Atlas of MS by the Multiple Sclerosis International Federation, released last year.

Diagnosis

Most people are diagnosed between age 20 and 40.

Between 1990 and 2010 there was a 2.4% annual rise in MS patients despite a fall in new cases in the UK.

Across the UK just over 6,000 people were diagnosed with multiple sclerosis during 2010 and there were nearly 127,000 people living with the condition.

Mean age of onset of symptoms is 30 years in Ireland, and 32 in the UK.

Mean age of onset in the US is 33 years of age, and 31 in Canada.

Approximate time in weeks from initial contact with the medical system to diagnosis in Ireland is 10 weeks, with data from the UK missing.

Approximate time in weeks from initial contact with the medical system to diagnosis in the US is 13.5, and 36 in Canada.

General

Globally, MS is the top disabling neurological illness of young adults.

Incidence and Prevalence

The incidence of a disease is the number of new cases occurring in a given period of time (usually a year) in a given population (usually 100,000). The prevalence of MS is the number of people with MS at a particular point in time, in a particular place. Most epidemiological studies in MS focus on prevalence.

In Ireland, approximately 7000 people currently have MS, while in the UK 100,000 people had MS in 2013.

In the US, 400,000 people live with MS, while in Canada there were 97,366 people with MS in 2013.

Since numbers are missing in certain countries, it is estimated that approximately 2.3 million people around the world have MS.

Globally, the median prevalence of MS is 30 people per 100,000, while in Europe there was an overall estimated prevalence rate of MS in Europe of 83 per 100,000, with higher rates in northern countries.

In Ireland, the prevalence is 140 people per 100,000 people, in the UK this is 164 people per 100,000 people.

Canada has the highest incidence of MS, with 291 people per 100,000, while in the US 135 people per 100,000 get a MS diagnosis. Denmark is second with 227 people per 100,000, followed by Sweden with 189 people.

Figures about incidence of MS per 100,000 is unknown in Ireland, while in the UK 4 people per 100,000 get an MS diagnosis.

Rates of MS are higher farther from the equator

It’s estimated that in southern states (below the 37th parallel), the rate of MS is 57 to 78 cases per 100,000 people.

In northern states (above the 37th parallel), the rate is twice as high, at about 110 to 140 cases per 100,000. The incidence of MS is also higher in colder climates.

No matter where they live, people of northern European descent have the highest risk of developing MS.

The lowest risk appears to be among Native Americans, Africans, and Asians.

Frequency of types

  1. Relapsing-remitting MS (RRMS): Approximately 85 percent of patients are diagnosed with RRMS at onset.
  2. Untreated, about 50 percent of people with RRMS transition to secondary-progressive (SPMS) within a decade of the initial diagnosis.
  3. Primary-progressive MS (PPMS) is diagnosed in about 10 percent of MS patients at onset. The rate of PPMS is equally divided between men and women. Symptoms usually begin between the ages of 35 and 39.
  4. Progressive-relapsing MS (PRMS) is the rarest form of MS, representing about 5 percent of MS patients. People with PRMS have clear relapses combined with a steady progression of the disease.
  5. Benign MS: Approximately 10 to 20 percent of people with MS have a “benign” course of the disease. This means they have only mild symptoms and little disease progression. However, long-term studies show that some of these patients experience some progression after 10 to 20 years. About one percent of patients develop an aggressive form of MS that progresses very rapidly.

Risk factors

The risk of developing MS is .001%, with a 2:1 ratio of women with MS to men.

If you have a parent or sibling with MS, you have 1 to 3% chance of developing it yourself. An identical twin with MS raises your risk to 30 to 33%.

Despite not knowing yet what causes MS, certain theories hint to a genetic predisposition combined with an environmental or viral factor. People with other autoimmune diseases, especially type 1 diabetes, thyroid disease, or inflammatory bowel disease are at slightly increased risk of developing MS.

Other risk factors hint at the relationship between MS and infections such as Epstein-Barr, herpes, and varicella-zoster, among others. However, MS itself is not contagious.

Symptoms and Treatment

The surprising fact of MS is that no two people have the same combination of symptoms, which means that symptoms vary a great deal from one patient to another. Approximately 45 percent of people diagnosed with MS don’t have severe symptoms.

Medication

Currently, there are 10 disease-modifying medications approved by the U.S. Food and Drug Administration (FDA):

  1. Teriflunomide (Aubagio)
  2. Interferon beta-1a (Avonex)
  3. Interferon beta-1b (Betaseron)
  4. Glatiramer acetate (Copaxone)
  5. Interferon beta-1b (Extavia)
  6. Fingolimod (Gilenya)
  7. Mitoxantrone (Novantrone)
  8. Interferon beta-1a (Rebif)
  9. Dimethyl fumarate (Tecfidera)
  10. Natalizumab (Tysabri)

Financial impact

MS is an expensive disease to treat. Direct and indirect health care costs range from $8,528 to $54,244 per patient per year in the United States. Compared with other chronic conditions, MS ranks second only to congestive heart failure in terms of costliness.

Research

ClinicalTrials.gov currently lists 423 open studies, with 201 in the US, 39 in Canada and 151 in Europe of which 8 in Ireland, and 34 in the UK.

Online

27 million pieces of MS shared online every day.

MS mentioned every 13 seconds worldwide.

People with MS share 70% of lifestyle issues and 30% of therapy issues online.

Article Sources

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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