Awareness and Education are Vital for Multiple Sclerosis
MS, the "invisible" disease: faceless and unknown to most of us
What is MS?
"I feel completely alone and abandoned in this battle"
Most people don't know much about MS. And most of the ones that do, don't really understand the terrible challenges of MS and the needs of MS sufferers.
People with MS are invisible to most of us. Feeling misunderstood and marginalized they often withdraw from society.
But the only way to move towards a world free of MS, and to ease the challenges of those living with MS until we get there, is to increase the support society offers. For that, more need to know MS exists, understand how terrible it is, and how we all can help.
No miracle cure for MS on the horizon
- MS has no cure, and it is so complex that even its cause is unknown
- Current treatments merely slow MS progression and work only in some people
- For many MS patients none of the existing treatments work
- Ongoing research will help improve treatments, but an MS cure is not yet on the horizon: developing a new drug costs $1 billion and takes 10 years, and none currently in development will cure or stop MS
"We know that it definitely takes more than scientific research to address the challenges of MS."
- U.S. National MS Society
How to help people with MS live with their disease?
- Support research to bring new, better treatments to market, hoping one day a cure will be found
- Increase awareness to improve the lives of people with MS now
"It's vital to raise public awareness. Fly for MS will change the present and future of MS. Its beauty and power touched us deeply. "
- Portugal MS Society
Increased awareness leads to more research
More reactions from MS organizations »
Reactions from people with MS »
- Increased awareness is key to expanding support for MS: more people will care if they understand better how debilitating MS is and how they can help
- Awareness has a multiplicative effect on all aspects of MS, particularly increased research funding
- Focusing exclusively on research limits support to the existing pool of people who already understand the case, so more research does not unfortunately lead to increased awareness
"Your effort to raise MS awareness is outstanding because there is hardly any attention paid to the hardships, challenges, financial struggles, joys, and hopes of living with MS."
- living with MS in California
"It is bold, imaginative projects such as Fly for MS that advance the effort to raise awareness for the challenges of living with MS and the funds needed to move us closer to a world free of the disease."
- U.S. National MS Society
Only improved knowledge about MS can address key issues faced by those living with MS
Access to existing drugs and therapiesFor example, only 1% of Poland's 50,000 people with MS have access to appropriate therapy, while Estonian MS patients do not have access to the most effective MS drug. Newer drugs will only add to the ones that many MS patients don't have access to.
Support servicesWheelchair-bound California MS patients risk losing essential home care services due to budget cuts. People with MS in Portugal do not have access to the much-needed specialized psychiatric services.
Treatment of MSIreland has less than half the number of neurologists the country should have. In many other countries MS is only treated in a few MS hospitals located in the largest cities. Even MS diagnosis is a big issue, let alone proper treatment.
Timely, proper MS diagnosisMS is routinely not diagnosed for several years after onset all around the globe, as family physicians fail to suspect MS and refer patients to MS specialists; During this time MS goes untreated, often with significant, irreversible consequences.
EmploymentThis is a major problem for people with MS, as they get fired or pushed into retirement prematurely, often soon after diagnosis, loosing their incomes and ending up alone and isolated. While people with MS cannot fly a plane, many can still do various jobs. A better understanding of MS would help employers learn how they can use people with MS, which will help them as well as the broader society, by keeping those with MS active in the economy.
Public attitudePeople with MS often hide their disease from friends and family, and when they cannot do that anymore they disappear from society altogether. Our ignorance makes those with MS feel misunderstood, discriminated against, and marginalized, leading to loneliness, depression and decrease in quality of life, all of which further exacerbate the negative impacts of MS.
"The statements MS awareness on your site are so true! I don't know what the solution is ... "
- living with MS in Australia
"We cannot cure stupidity, but we can cure ignorance. This is a great idea!"
- Prominent MS advocate and employment lawyer
Your group of amazing individuals gives me new found hope that maybe there really is the possibility of
widespread awareness, support, and understanding
for people living with Multiple Sclerosis. It is very
heartening and hopeful for me, to see such clear evidence that you don't have to "get it" to GET IT.
- living with MS in Florida
Read the entire letter »
More awareness & education have an immediate, tangible impact on the lives of those with MS
Moves MS higher on government agendasGovernments are the ones who can provide easier, cheaper access to treatment, more doctors, improved diagnosis, and more support services.
Educates employersHelps them understand how to keep people with MS as productive members of society.
Changes the public's attitudeMore understanding of what living with MS is would allow the rest of us to help people with MS live fuller, happier lives, and minimize the burden of their MS.
Contrast: Multiple Sclerosis vs. Cancer
- Everyone knows what cancer is. Few really understand what MS really is. Fewer still understand its challenges.
- Cancer needs just better treatments, so only more research.
- MS needs better treatments too. But MS needs significantly more awareness and education also.
- MS sufferers live an ever deteriorating life for years or decades. Only a broader, better understanding of the challenges of MS can lead to making the lives of those with MS more tolerable and their fight with the disease easier.