Charity AIMS to help MS patients to have HSCT

A new multiple sclerosis charity has appeared in the UK, inspired by one successful HSCT treatment, provided free of charge by the country’s National Health Service (NHS). It is the first charity dedicated to autologous hematopoietic stem cell transplantation (HSCT) for MS patients living in the UK.

The treatment was given to James Coates two years ago. His story can be read here.

AIMS

Alison and James Coates.

James and his wife Alison are now behind the launch of the AIMS (Auto Immune and Multiple Sclerosis) charity.

Alison explains: “James was lucky enough to access HSCT on the NHS, and we wanted to give something back. We were also very frustrated at reports of misinformation given to patients by their neurologists and other MS agencies.

“Such misinformation includes a much higher mortality rate than is accurate, and that HSCT wouldn’t be suitable for them because they have progressive MS. In fact, HSCT halts progression in the overwhelming majority of patients irrespective of MS type. There are also general inaccuracies about the criteria for NHS acceptance – and that’s still happening every day.

“We wanted to do something to put the record straight and all our trustees feel very strongly about that,” she said.
AIMS itself received confirmation of its registered charity status on April 11 this year (registered chatity 1177907). Its primary objective is to signpost to qualified medical specialists during the patient’s research phase, with a view to providing grants as its funding income is developed.

Alison says: “Essentially, AIMS intends to signpost for other hematologically-routed AI diseases (ie: CIPD, Lupus and Systemic Scleroderma) as these conditions, in addition to MS, are treated with HSCT at Clinica Ruiz in Puebla, Mexico, and AA Maximov hospital in Moscow, Russia. Further recommended clinics may be added later.

Main focus on MS

“Our main focus is on multiple sclerosis patients. We plan to offer both financial support AND signposting to UK-based MS patients who are accepted for HSCT in the UK or at either of the above facilities, as MS is the disease that is currently treated within the UK on the NHS.”

Every charity has to have trustees and, for AIMS, those trustees rightly include both James and Alison. But the couple’s involvement doesn’t stop there. James heads the charity’s finance team, while Alison leads the publc relations and media team.

On December 1, AIMS charity will be holding its first major fundraiser – a super black-tie dinner, with entertainment. It will be selling tables of 8 and 10 for an event that will double as its ‘launch party. I know your support will be very much appreciated, so check out the charity’s Facebook page at https://www.facebook.com/aimscharity.org/.

James says: “We have run smaller fundraisers – our Trustee Paddy has participated in Tough Mudder for us, and we’ve received a number of donations – the December 1 dinner will be our first big event.
“We are hoping to raise upward of £50,000 annually, which would help many people to access HSCT and support them in terms of their travel expenses.”.

Looking to the future, AIMS proposes to support the travel expenses of UK-based MS patients. Initially, they must have been accepted for HSCT treatment in the UK, Clinica Ruiz in Puebla, Mexico and AA Maximov hospital in Moscow, Russia.

AIMS is quite clear that it will only give grants towards travel costs and funding will only be allocated to patients who have secured a place at a qualifying facility. It will not contribute towards the treatment itself.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

On your marks for World MS Day 2018

World MS Day is only one month away!

World MS

MSIF logo.

World MS Day is almost with us, in fact the countdown has begun to May 30. World MSOrganiser, the MS International Federation (MSIF) says the #bringinguscloser campaign is now in full swing.

In a statement about the day, MSIF said:

Progressive MS Alliance

Over the years, the global MS community has celebrated huge progress in research and treatment for relapsing MS. For progressive MS, however, results have been more limited.

Since 2012, MS organisations around the world have been fighting to change this. How? By joining together to form the first global collaboration on progressive MS: the International Progressive MS Alliance.

Discover more about progressive MS and how the Alliance is bringing us closer to ending it.

Find an event or add your own to the map!

Organisations across the globe are busy preparing for World MS Day.

On the map, you’ll find some new exciting additions: MS Ireland is holding a networking event for researchers. In Uruguay, a stand-up comedy show will bring together people affected by MS and doctors, nurses, psychologists, scientists and many more.

There’s still time to organise your own event! Search the map for events taking place near you and get inspired.

Celebrating progress in MS research

MS research is bringing us closer to ending MS. In order to maintain this momentum, it’s crucial to promote and reward innovation and achievement in MS research.

Discover how organisations across the global MS movement are supporting and rewarding people who are dedicated to advancing MS research, including ambitious students and young researchers.

Frances Evans, UK

World MS.

Frances Evans.

‘MS is different for everyone. I know I won’t experience all of the symptoms in my lifetime, but I do know what it’s like to live with some of the life-changing challenges that come with it.’

As a teenager, Frances had already chosen to become a research scientist. Then, at 19, she was diagnosed with MS. Despite feeling scared, Frances used her experience as motivation to focus her career on MS research.

Discover more about Frances’s journey.

Yaou Liu, China

World MS.

Yaou Liu.

As a medical student, Yaou felt inspired after meeting young people living with MS. ‘We were peers, brilliant with beautiful dreams’, he remembers. ‘Yet they lived with MS, which set huge barriers for them.’

‘This inspired me to get involved in MS research.’

With support from MSIF’s Du Pre grant and McDonald Fellowship, Yaou has forged a successful career in MS research and is bringing us closer to ending MS.

Milestones in MS research

Over the past 150 years, so much has changed in MS research.

Yet, MS researchers today still use the definition of MS that was first introduced by French neurologist Jean-Martin Charcot in 1868.

This is just one of many milestones in MS research – visit the World MS Day website to discover more!

#bringinguscloser

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Conservative peer calls out McVey for lying to MPs about Motability

Current work and pensions secretary Esther McVey stands accused of lying to fellow MPs about the Motability disability car scheme. In parliamentary-speak, this is called ‘misleading the house’.

And the accusation comes from within her own party!

Lord Sterling, who was a founder of Motability in 1977, told McVey in a letter that the “litany of inaccuracies”, in a House of Commons debate earlier this month, were “deeply troubling”.

motability

Lord Sterling.

His letter revealed that 75,000 Motability customers had to return vehicles following reassessment for which her department (DWP) was responsible. They had previously claimed disability living allowance (DLA) but had been reassessed for personal independence payment (PIP), and lost entitlement.

The February 8 debate followed a claim, in the Daily Mail newspaper, that Motability Operations (MO) had £2.4 billion reserves. A second claim was that Motability chief executive, Mike Betts, had a £1.7 million pay and bonuses package. 

But Lord Sterling’s letter said that the debate had been “deeply flawed and misleading”. He wrote that some errors related to claims that the charity was holding the reserves and running the scheme, and that Betts was employed by the charity. None of those is true.

He pointed out the scheme was delivered by MO under contract to the Motability charity, not by the charity itself.

He told McVey that a separate letter, correcting “many false statements”, was sent to her by Motability Operations.

motability

Esther McVey, work and pensions secretary.

McVey makes serious errors in Commons

He pointed out that McVey herself had made four serious errors:

  • Error 1: She had called for the charity’s trustees to be “held to account” after another MP told how a constituent who had been a lifetime recipient of DLA had been threatened with having her Motability vehicle removed on Boxing Day.

Fact 1: Sterling said this was a result of a PIP reassessment – carried out by the DWP. It was the department that had decided the constituent was no longer eligible for the higher rate of mobility support. This made her no longer eligible to lease a car through the Motability scheme.

  • Error 2: McVey’s claimed in the debate that it had been her intervention, as minister for disabled people in 2013, that led to Motability agreeing to pass £175 million to former DLA claimants who lost their Motability vehicles in the reassessment programme.

Fact 2: Not true said Lord Sterling.  Minutes of the charity’s meetings showed that its own trustees had made this decision themselves the previous year. They “felt a moral obligation to help people at risk of losing cars due to government policy changes”. In fact, they had already decided by December 2012, months before McVey’s intervention, “to provide a package of significant financial support and other assistance”.

Furthermore, he said McVey had suggested in 2013 that this support should only be focused on the initial stage of reassessments, up to 2015-16. However, Motability’s trustees wanted to provide financial support “over the full period of the DWP’s reassessments”.

He added the charity had to face customers who were “confused, distressed and even suicidal, as they worry about losing their mobility”.

No basis to demand money

  • Error 3: McVey told MPs that the DWP would use money regained from Motability to help constituents whose cars had been removed before their PIP appeals had been heard.

In the debate, she said: “When we have got the money back from Motability, we believe we should to support disabled people, that is one of the first things it should be used for.”

Fact 3: Lord Sterling poured cold water on this suggestion.  He said there was “no basis on which the government can demand any money to be handed over”.

  • Error 4: McVey claimed that the charity was piloting a scheme – “after direction from the department” – to help disabled children under the age of three.

Fact 4: Lord Sterling dismissed this, and said the scheme was actually being piloted by MO and there had been “no direction” from DWP.

motabilityA DWP spokeswoman refused to say if McVey would apologise for the “inaccuracies” in her statements to MPs.

Instead, she said: “When PIP was first introduced, the government worked with Motability to design an extensive £175 million transitional support package to support Motability customers who have not been awarded the enhanced mobility component on reassessment from DLA to PIP.

“While the department works closely with Motability, it is an independent charitable organisation and therefore we are not directly involved in determining scheme policy or operational issues.”

Review call rejected

McVey has suffered another setback. She called, in the debate, for the Charity Commission to carry out another review of the financial relationship between the charity and Motability Operations. This would have followed one it carried out last year. In response, the commission declined to do so, and said that it has no new concerns.

motabilityIt issued a statement, saying: “In light of media reporting about the Motability scheme, we reviewed the highlighted issues to see if there was anything we had not investigated as part of our previous regulatory compliance case in Motability… which was under our jurisdiction as regulator of charities in England and Wales.

“Having reviewed the latest information in the media we have concluded that, as set out in our statement on 8 February, there are no new concerns that come under the commission’s jurisdiction.”

As a former client of Motability, I can say I always received excellent service. If I still lived in the UK, I would still be driving one of the schemes cars. Unfortunately, the mobility element of DLA and PIP is not paid to people living overseas – so I bought my own.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Steps to Overcoming MS but MS Society warns diet is unproven

Overcoming MS (OMS) is a popular, yet unproven, diet and lifestyle programme for people with MS. And in just under two weeks, on Sunday October 22, you can learn more about it at an OMS conference in Brighton, UK.

OMS

Professor George Jelinek (Pic: Overcoming MS).

Overcoming Multiple Sclerosis claims to promote the integration of diet and lifestyle changes into standard medical management to improve the health and lives of people with multiple sclerosis”. Professor George Jelinek, of Melbourne, Australia, developed the OMS Recovery Programme more than 15 years ago. He received a diagnosis of MS in 1999.

OMS started in Australia and New Zealand. It is a non-profit organization and accepts no funding from the pharmaceutical industry. In 2011, it formed a charity in the UK to with the aim of making the OMS programme available worldwide.

omsThe one-day conference is to include a number of presentations These are to focus on the seven steps of the recovery programme: diet, sunlight and vitamin D, exercise, meditation, medication, preventing family members from getting MS, and doing whatever it takes to overcome MS.

Organisers say the event will be of value to anyone, whether newly diagnosed, new to OMS or someone who has already been on the recovery programme for some time.

OMS step by step

So, what’s in the OMS recovery programme? To summarise:

  • Diet and supplements
    • A plant-based wholefood diet plus seafood, with no saturated fat, as far as is practical
    • Omega-3 fatty acid supplements: Take 20-40mls of flaxseed oil daily; fish oil can be used instead if desired
    • Optional B group vitamins or B12 supplement if needed
  • Vitamin D

    • Sunlight 15 minutes daily 3-5 times a week as close to all over as practical
    • Vitamin D3 supplement of at least 5000IU daily, adjusted to blood level
    • Aim to keep blood level of vitamin D high, that is between 150-225nmol/L (may require up to 10,000IU daily)
  • Meditation

    • 30 minutes daily
  • Exercise

    • 20-30 minutes around five times a week, preferably outdoors
  • Medication

    • In consultation with your doctor, if a wait and see approach is not appropriate, take one of the disease-modifying drugs (many may not need a drug, and drug selection should be carefully weighed against side effects)
    • Steroids for any acute relapse that is distressing
    • One of the more potent drugs if the disease is rapidly progressive

The MS Society, on its website, has expressed a note of caution. It says there is no conclusive evidence of the benefits of the proposed diet, a key component of the programme. It warns that the diet may not provide enough protein and may be too low in energy.

omsThe society says: “The OMS diet recommendations are similar to the Swank diet. It advocates cutting out dairy and meat, and reducing fat intake – particularly saturated fat. It also recommends supplementation, particularly with omega 3 (in the form of fish oil or flaxseed oil) and vitamin D if your exposure to sunlight is limited.

“Research into this diet has not provided conclusive evidence of its benefits. However, as with the Swank diet, following the OMS programme is not likely to be considered bad for you.

“You should make sure you’re getting enough protein in your diet, through eating plenty of fish, beans or pulses. Likewise, the diet may be low in energy, so it may not be suitable for you if you have high energy needs or you are already underweight,” says the society.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Government figures prove UN’s human catastrophe verdict

Shocking new figures underline the facts behind a UN committee’s decision to describe UK welfare benefits as a human catastrophe.

And the figures come from the government’s Department for Work and Pensions (DWP). Not that they were provided willingly. The MS Society forced them out by a freedom of information request.

During the first three years of Personal Independence Payment (PIP), people with MS have lost at least £6 million a year in benefits, according to the society. PIP started to replace Disability Living Allowance (DLA) in 2013.

The Department for Work and Pensions admitted that between October 2013 and October 2016:

  • almost one in three people (2,600) with MS who received the highest rate mobility component of DLA had their payments cut after they were reassessed for PIP.
  • nearly a quarter (800) who received the highest rate for the care component of DLA had their payments cut after being reassessed for PIP.

System doesn’t make sense

reassessed

Genevieve Edwards (pic: MS Society).

MS Society director of external affairs, Genevieve Edwards, said: “These staggering figures show how PIP is failing some people with MS who need the highest level of support.

“It doesn’t make sense that people are losing money they once qualified for, when they are living with a progressive condition.” I agree, the disease gets worse progressively, not better.

The society is rightly worried that many people no longer get what they were entitled to, and should still be able to claim. Their individual situations are no better but their care benefits have been cut.

One problem is when people are unable to explain the reality of living with MS when reassessed for PIP. And assessors, who are of dubious quality, rarely understand how unpredictable it can be.

Harder to get highest rate mobility under PIP

Additionally, it’s now also harder to qualify for the highest rate of mobility support for PIP. And that’s what you need to take advantage of the Motability car scheme.

Before the changes, under the DLA claimants wouldn’t receive the highest level of support if they could walk more than 50m. Now, under PIP, they won’t get the higher rate if they can walk more than 20m – including the use of sticks or walking aids, if needed.

Exactly what the basis of that change is, I just don’t know but it is unfair. Interestingly, on May 4 last year Baroness Altmann, then minister of state at the DWP, said in the House of Lords: “I would like to clarify what appears to be a widespread misconception regarding the differences between the mobility assessment in PIP and the mobility assessment in DLA. (See my post of May 16, 2016, Disability: There is no 20-metre rule, says minister).

“Many noble Lords have spoken of a ‘20-metre rule’, but there is no such rule. Some people believe that we have changed the assessment of a distance a claimant is able to walk from 50 metres to 20 metres. This is not the case.”

What a load of absolute codswallop.

  • Have the requirements changed between being assessed for DLA and being reassessed for PIP? YES.
  • Is the cut off for highest rate mobility payment now being unable to walk 20m instead of 50m? YES.
  • Did Baroness Altmann lie? Well by archaic tradition, she cannot be accused of lying as she made the statement in the House. She can only be guilty of “misleading the House”. It is clear, she did mislead the House.

Now, what is a non-parliamentary term for deliberately misleading the House? Let me think. Oh yes, I remember, it is LYING.

Fix this broken system, MS Society demands

The MS Society is calling on the government to urgently fix “this broken system” and ensure PIP assessments reflect the realities of living with MS. I couldn’t agree more.

“Having MS is hard enough. It shouldn’t be made harder by a system that doesn’t make sense,” said Ms Edwards.

And so say all of us. 

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

 

MS Walk discount for early registration

Every charity associated with any kind of disease, disorder or other health issue always needs to raise money. This may be used for all-important research, much need care, or raising public awareness.

Multiple sclerosis societies in countries all over the world are no different in this respect. Their work all needs money.

The UK’s MS Society is holding one of its major fundraising events, the popular MS Walk, in September. And there is a special offer for anyone who wants to take part.

So, anyone planning to signi up to join the walk should do so by this Wednesday, that’s July 12. That way they can take advantage of a 20% discount on the cost of the registration fees. These are £15 for adults, £7 for under 18s and free for five years and under.

ms walk

Having fun at last year’s MS Walk. (Pic: MS Society).

Helen, of the society’s community and events team, says: “Registration is now open for the annual MS Walk and for one week only, we’ve got a special offer on our sign-up fees! As the offer is only open until the July 12, so you need to be quick to avoid disappointment.”

Furthermore, anyone who wants to walk, roll or stroll, every step will take the society closer to its goal.

Hundreds of MS Superstars, friends and families, will join forces in London to take in the sights and raise funds to stop MS.

Both the MS Walk’s short and medium routes are fully accessible and all three start and finish in Battersea Park. At the end of the challenge the society will celebrate everyone’s achievement with food, drinks, music and fun in the park.

The three routes are:

  • Short / 6km route – Fully accessible
  • Medium / 10km route – Fully accessible
  • Long / 20km route – Please get in touch with the society if you’d like to find out more about the accessibility of this route.

Helen continues: “MS Walk is fun for the whole family. They can walk or wheel one of three picturesque London routes on Sunday September 24.

“Last year, Paralympic swimmer and MS Society Ambassador, Stephanie Millward, walked with us. Stephanie lives with MS, and wasn’t sure about taking part.”

MS Walk ‘believe you can’

Stephanie was made an MBE in the Queen’s New Year’s Honours list. She explains: “When I was asked to attend the MS Walk, I thought ‘Me? Can I do a five, 10 or 20 kilometre walk? No chance. I would never be able to do that.’ But then I thought ‘yes – you can do anything if you believe you can’.”

If you feel inspired to join in the fun and help the MS Society turn the streets of London orange this September, register now.

And don’t forget to sign up by Wednesday to take advantage of the special offer to gain a 20% discount!

To register go to https://www.eventbrite.co.uk/e/ms-walk-2017-registration-34660345025 and use the code MSW20 to get the 20% discount.

After signing up, all participants will receive:

  • An MS Society orange t-shirt
  • An event day pack with detailed maps and information
  • An invitation to a fantastic post-event celebration in Battersea Park
  • Lots of tips and advice from the MS Society team to help them raise as much as they can
  • Support on the day from MS Society staff and volunteers

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Excuse me, which charity does your ribbon represent?

There are only a limited number of colours, and combinations of them, but there are many health and disability causes. That’s the reason why, for each color, there are a number of charities that use it for their publicity and fundraising activities.

Just take the orange ribbon as an example. We know that it is the colour adopted for multiple sclerosis in many countries. Additionally, orange is also used by these causes:

Confusing, isn’t it? Including MS, that’s 14 separate causes to have chosen the orange as the colour of their official ribbon.

Colours started with red

It started more than 25 years ago. The red awareness ribbon for HIV/AIDS was launched by the AIDS Ribbon Project at the 45th Annual Tony Awards ceremony on June 2, 1991.

Yes, the red ribbon was, apparently, the first ever ribbon symbol. And that led to all the rest, including the orange ribbon for MS and the renowned pink one for breast cancer awareness.

Mind you, there s nothing new about wearing coloured symbols. For example, each political party has its own colour. Parties use their colours for promotional material and election rosettes worn by party workers. What’s more, William Shakespeare wrote about coloured symbols that people wore.

In the famous English playwright’s classic Othello (Act iv, scene 3), Desdemona refer to an early version of the song “All round my hat, I wears a green willow”. The lyrics say: “If anyone should ask, the reason why I wears it, tell them that my true love is far, far away”.

Today, we have so many charities, and other causes, all trying to raise money and awareness. And there are too few colours to go round.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.