Paul pays tribute to dedication of staff as he prepares to leave Moscow HSCT centre

Although I have taken a break from writing during August, I just had to catch up with Paul Morrison who, earlier this month, travelled to Moscow to undergo HSCT for multiple sclerosis. The exact type of the disease is a matter of opinion, his neurologist says Paul has SPMS, but tests in Moscow indicate a diagnosis of RRMS. I know who I’d believe.

He is now approaching the end of his treatment and is set to return home next Tuesday, September 4.

dedi.cation

Paul in Moscow during the early stages of HSCT.

In the last three weeks, he has had his stem cells collected and stored, had chemotherapy to suppress his immune system, had his stem cells returned, and spent some days in isolation.

Of course, there’s more to it than that, they are just the high points. One vital part is the battery of tests carried out before the therapy can begin. And, in Paul’s case, thereby hangs a tale.

Paul explains: “They found 27 more brain lesions than my neurologist (at home), and a lesion blocking over 50% of my spinal cord.

“I have had a separate appointment with neurologist while in Moscow. And he said I am lucky that the nerve endings are not dead. This means I will have a  very good chance of regaining my walking function.”

Tribute to dedication

That such a discovery, was made in Moscow is a great tribute to the professionalism and dedication of Dr Dennis Fedorenko and all his team.

And that’s a view shared by Paul. Summing up his time in Moscow, he said: “From the cleaners who keep our rooms spotless and our spirits high, the nurses who take the extra time to make all the procedures so painless, to the doctors who have more dedication than I have ever experienced. Not to forget Anastasia Panchenko. And to have a protocol that is absolutely amazing.”

dedication

Claire Morrison.

Claire stayed at home with their three children and is looking to the future with hopeful anticipation. She said: “it has been a long hard road but we can finally start to see light at the end of the tunnel. It would not have been possible without the generous donations from family, friends, and strangers. Their kindness has overwhelmed us.

“Charlotte, Ben, and Alvaro are so excited to see their dad, and I am looking forward to Paul’s recovery, waving goodbye to the drugs and, most importantly, halting this dreadful disease.

“Fingers crossed, bye-bye MS. We are all feeling hopeful.”

Although not wanting to be a wet blanket, I felt the need to say a few words. I told Claire: “Recovery is like a roller coaster ride, Expect ups and downs. Don’t get dispirited.”

Claire replied: “Paul is in high spirits, so can’t wait for the next chapter. I will try to keep my spirits up during the recovery down times.”

Lisa and I will be meeting up with Claire and Paul once he gets back to Spain and is well enough to receive visitors. Watch this space!

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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.

Paul’s Moscow HSCT for MS journey begins

I had planned to take a break from writing this month, August being a slow news month that is well known among journalists as the silly season. That’s when minor stories are given major coverage, because of a shortage of stories of real substance.

Paul Morrison and his wife Claire.

However, I could not let Monday August 6 go unmarked.

Why? Because, after months of fundraising, it is the day when Paul Morrison flies to Moscow to undergo HSCT in his fight against MS. He goes with my best wishes for a great trip ad a successful outcome.

I first wrote about Paul’s story here, and since then, he told me last week, the income from his fundraising efforts had reached $45,000.

I plan to catch up with former Londoner Paul after his return to Spain, where he lives just a few miles from me. Watch this space for HSCT news from Moscow and future updates.

# # #

Unless anything happens that I feel must be highlighted, I’ll be back in September.

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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.

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.

* * * * *

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.

#paulsfighttowalk : Support sought for HSCT in Moscow

Former Londoner Paul Morrison is seeking support to travel to Moscow to receive hematopoietic stem cell transplantation (HSCT) in August.

These days Paul (46) and his family live a stone’s throw from my home in southern Spain. He shares my challenge of living with multiple sclerosis.

His dad, Phil, has set up a GoFundMe account, using the tag #paulsfighttowalk, with a target of raising £40,000 ($55,000). In just 19 days, more than £15,000 has been donated.

Phil said: “Paul has been tested positive for a virus that means he cannot receive second-stage medical treatment. Therefore, HSCT is his last chance. All the funds raised will be spent on Paul’s treatment.

The Spanish town of Vera’s Lions Club has got behind the appeal. Besides collecting money in local stores, it has named Paul’s cause as one of the recipients of cash raised at the large LionAid Party in the Park held on Sunday, April 15. According to the event’s Facebook page, it raised 5287.65€ (£4.630; $6,450).

Paul’s wife, Claire, said: “My husband Paul, dad to Charlotte, Ben and Alvaro, was diagnosed with MS last April.

“It’s a horrific disease and unfortunately Paul’s condition has progressed at a rapid rate. He now walks with crutches and his balance is kaput. My heart goes in my mouth every time he stands up.

“His speech has deteriorated and more frequently can’t get his words out and struggles to keep up with conversations. His memory has gone. PIN numbers and appointments, forget it.

“Spatial awareness has gone so simple tasks like cooking are a challenge. Some days are worse than others and these symptoms are just the tip of the iceberg. For a man who worked six days a week, in a physical job, this is life crushing.

One heartbreaking moment after another

“The impact on our family is immense. From a stay-at-home mum, I now work full-time to keep the family afloat. Paul was our fixer, our tell-us-what-to-doer, our money earner, our organiser, our crutch.

#paulsfighttowalk

Paul and Claire Morrison,

“Now we have one heartbreaking moment after another and the final blow was when he realised he couldn’t even walk our little boy to the park.”

Having tried disease modifying therapies (DMTs) and experienced sid effects that Claire described as “horrific”, they are turning to HSCT

Claire said: “After intensive research, and the results of an international study recently published, it has been shown as the most effective way of treating MS. It can halt this disease and in many cases reverses disability.

“The treatment has been available to a small number of sufferers in London and Sheffield and it will soon be recognised as an established treatment in the UK but we cannot wait.

“Paul is progressing at a rapid rate and he will soon be in a wheelchair. This has forced us and many other MS sufferers to go abroad as time is of the essence. We have spoken to neurologists’ far and wide and this is our best and only chance to halt the disease.”

Dr Denis Fedorenko.

Paul applied to the Moscow clinic headed by Dr Denis Fedorenko, one of the world’s leading HSCT centres, and was accepted.

That good news came at a price, though.

“We need you to stand with us and #paulsfighttowalk. Help us raise £40,000,” said Claire.

Having visited the Moscow HSCT centre 18 months ago, I can confirm the facilities are fantastic, the staff are brilliant, and Dr Fedorenko´s team has a tremendous record. Paul will be in the best of hands.

If you’d like to help Paul on his way, you can do so here,

#paulsfighttowalk

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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.

* * * * *

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.

HSCT ‘safe and effective’ for people with relapsing MS, international study

At last, interim results of an international study show haematopoietic stem cell transplantation (HSCT) is an effective and safe treatment. It outperforms disease modifying therapies (DMTs) for people with highly-active relapsing MS.

Sadly, though, that’s as far as the study goes. Despite there being numerous people with progressive MS who say they have benefited from HSCT, the study only talks about the relapsing form of the disease.

However, notwithstanding its shortcoming, it is great that the first large scale, international. randomised study into HSCT has shown such promising results.

The trial, known as MIST, showed HSCT can stabilise relapsing MS and improve disability in people who were still experiencing relapses while taking DMTs.

Professor Basil Sharrack.

Researchers Professor Basil Sharrack and Professor John Snowden, led the UK arm of the trial at Sheffield’s Royal Hallamshire Hospital. They describe the findings as ‘hugely encouraging’.

Sharrack said: “Almost all patients receiving autologous haematopoietic stem cell transplantation showed no signs of their disease being active a year on from having the treatment. And more importantly, their level of disability improved significantly.”

While that is good news, it is generally accepted that the recovery period for people after undergoing HSCT is two years. And that recovery period has many ups and downs, often referred to as a rollercoaster ride.

The trial involved 110 people who’d had at least two relapses in the past year while on a DMT. These were divided in two, with half having HSCT while the other half continued to take the DMTs recommended by their neurologist.

HSCT outstrips DMTs

The study analysed the results, in particular the number of relapses participants had and the progression of their disability. Just one of those who had HSCT suffered a relapse, which is tremendous when compared to people who stayed on DMTs. Of that group, 39 had relapses.

Under the rules of the study, anyone on DMTs who continued to have relapses could switch to the HSCT arm of the trial. Most of the 39 who had relapses, a total of 30 people, did switch. Encouragingly, their condition improved.

The study’s results have not yet been published. They were presented at the annual meeting of the European Society for Blood and Marrow Transplantation (EBMT). Next, they will need to be published in a peer-reviewed journal.

Dr Susan Kohlhaas, MS Society director of research (pic: MS Society).

The UK’s MS Society director of research, Dr Susan Kohlhaas, cautiously praised the results. She said still more information is needed about HSCT’s relationship with DMTs:

On the society’s website, Kohlhaas said: “The MIST results are important and show this area needs further research. While HSCT appears to be effective for some people with MS, it remains a high-risk treatment that won’t be right for everyone. We now need to know how HSCT compares to existing, less aggressive, MS treatment options.” 

Making sure HSCT is accessible for people who are eligible should also be prioritized, Susan said.

Promisingly, she continued: “HSCT will soon be recognised as an established treatment in England. And when that happens our priority will be making sure those who could benefit can actually get it. We’ve seen life-changing results for some people and having that opportunity can’t depend on your postcode.” 

Let’s hope that, when the study’s final results are published, HSCT will be approved as a treatment for MS. That, of course, will be up to the FDA and other regulatory bodies worldwide.

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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.

* * * * *

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.

* * * * *

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.

Caroline hopes HSCT has halted MS – 12 months on, no new lesions

HSCT is a great treatment for multiple sclerosis but, to be fair, its beneficial effects are not felt by everyone who undergoes the therapy.

Autologous hematopoietic stem cell transplantation, to give HSCT its full title, is an intense procedure. It involves harvesting stem cells from each patient, doses of chemotherapy suppress the immune system, before the stem cells are given back. Their job is to aid the building of a rebooted immune system, hopefully free from MS.

Most people who have gone through HSCT report tremendous success and report significant improvements in their symptoms. Unfortunately, not everyone is so fortunate and don’t talk of experiencing any improvements.

hsct

Caroline Wyatt, BBC News special correspondent until MS intervened (Pic: BBC News).

Former BBC tv news special correspondent Caroline Wyatt made her decision to travel to Mexico for treatment at Clinica Ruiz.

She flew to Mexico for HSCT therapy and returned to the UK 28 days later.

Now, Caroline has talked about her experiences, from her first symptoms in 2002, MS diagnosis in 2015, HSCT, and beyond.

Her full article is well worth reading and can be found here.

And, how is she now? Caroline writes:

Today, I quite often feel worse than I did before HSCT.

I still need to rest frequently during the day, and when I use my energy for work, I have none left for anything else at all.

But there are sunnier days when I feel a little better than I did immediately before the treatment, and then my hopes soar.

Of the other HSCT patients with whom I keep in touch via several vital support groups on Facebook, some have seen improvements and are overjoyed.

Play a full part

Once again, they can play a full part in family life, and work without exhaustion. Many train hard at the gym or at home, doing their best to regain limb function and balance that was lost over many years.

Others report little change.

And a few have said that they now feel worse than they ever did before HSCT, and wish they had never had the treatment.

hsct

Caroline’s hair is regrowing. It fell out after chemotherapy (Pic: Caroline Wyatt).

Some have had fresh relapses since their transplant, and wonder whether to have HSCT again, or re-start MS drugs. It isn’t yet clear why there is such a wide variation in response.

Much about the long-term impact of HSCT on auto-immune diseases, from MS to systemic sclerosis or Crohn’s disease, is still unknown, and may remain unclear until the causes of these diseases are better understood.

Soberingly, over the past year, some patients at international centres have died while having HSCT, making clear that it is not a treatment to be entered into lightly, however effective it can be in halting progression for some.

Many patients have struggled after transplant with everything from migraines, headaches, swollen feet or agonising neuropathic pain in the hands and feet, to viruses or bacterial infections that affect the bladder.

They can also develop other common infections that resurface in the body when the immune system is fragile, such as the Epstein-Barr virus, herpes or shingles.

However, my latest MRI brain scan shows that so far, I have no new lesions on the brain.

It’s a sign, I hope, that I shall be among the lucky ones for whom the treatment does halt further MS progression for several years.

And that’s an outcome I am sure we can all wish for Caroline.

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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.

* * * * *

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.

* * * * *

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.

Drugs, risks, spending cuts, deaths, new drugs, and so much more

As we reach the start of another year, it seems a good time for me to review the last 12 months, as seen through the eyes of 50shadesofsun.com.

January

The year began by focusing on hematopoietic stem cell transplantation (HSCT). Dr Denis Fedorenko of the HSCT centre in Moscow published a guide to the procedure.

Russian Physician’s Guide to HSCT in Moscow

people withFebruary

UK government policies grabbed my attention, along with actions regarding people with disabilities and benefits to which they are entitled.

Disabilities: Government loses tribunals, then changes rules

Disabilities: Government warned forced activities ‘could make health worse’

More flock to accuse disability assessors of lying

March

New treatments came to the fore this month. Ocrevus gained approval from the FDA, while Zinbryta got the go ahead for use in the UK.

After Long Wait, Zinbryta Gains Approval in Areas of the UK

Ocrevus: Counting Down to Expected FDA Approval

April

Allegations had been made that new disability access policies at Disney parks was discriminatory. However, a court decided that the new way of doing things was perfectly ok.

Disney Disability Access Rules Don’t Break Law, Court Rules

May

MS treatments were in the spotlight once again. Questions were being asked about the drug safety and why many people choose to avoid them.

Mixed messages about beta-interferon safety to treat MS

Why are DMTs – Drugs to treat MS – Resisted by so Many?

June

My attention was caught by one of the UK government contractors trying to put the chaotic assessment process behind it. It chose to change its name but that was fooling no one.

I also looked at the much valued and desired matter of independence.

Atos tries to escape its past though superficial rebranding

Even a little independence is a great feeling

July

Risks appeared on two fronts. First, death and serious injuries to patients to the use of Zinbryta being limited in Europe. Second, people with disabilities in the UK were still facing the risk of benefit cuts.

Zinbryta use restricted in Europe after a death and four serious liver injuries

Disability benefit cuts are still a real risk

August

Issues with lack of balance and mobility means that falls are a frequent reality. However, not all falls are the same.

I also looked at MS treatments and how close we might be to finding the holy grail – a cure.

Falls – the good, the bad, and the ……

Cure for multiple sclerosis: Are we close?

September

Inside criticism surfaced about mismanagement of disability benefits. Nothing new to me but good to have confirmation from within. On the same tack, the UK government department responsible for benefits was trying to hide assessment problems.

Talking of confirmation, my theory the MS is linked to glandular fever, or mononucleosis, was backed by researchers.

Department helpline worker lambasts mismanaged disability benefits system

I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

DWP fights to hide WCA ‘under-performance’ and PIP assessments

October

A number of drugs were labelled ‘rip-offs’ in a new report. These included MS drug alemtuzumab.

UK government officials proved they do not understand variable conditions, such as those experienced by people with MS.   

MS therapy alemtuzumab is named a ‘rip-off’ drug, report

Disability benefits stopped because government doesn’t understand variable conditions

November

The number of people wth MS in the USA is more than double that previously thought. Could that be similar elsewhere?

We knew UK spending cuts were dangerous but now we know that they have ben responsible for needless deaths.

Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

Needless deaths caused by government spending cuts

December

Great to see the doctor who first suggested CCSVI treatment could help people with MS now agrees this isn’t true.

However, shocking to see that someone assessed as ‘fit to work’ died before the appeal could be heard.

CCSVI treatment does NOT work for MS, says clinical trial

Assessment disgrace: ‘Fit for work’ man dies before ESA appeal can be heard

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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.

* * * * *

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.

* * * * *

Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and 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 and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.