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A powerful letter to my MS

Multiple Sclerosis.

You’re here.

Not residing anywhere else but here, inside me.

Nine years and counting. Probably a lot longer if you really want to play dirty.

Why did you choose me when there were so many other people you could have picked? You were probably out for vengeance for working too hard and resting too little. You probably thought it would be fun seeing me cry at the bottom of the staircase when I was too tired to go upstairs. Did you now, did you truly think it was slapstick-funny?

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An Open Letter To Those Without MS

I’ve known about this letter for a while now, and sometimes I feel the need to read it again, as if by reading it once more, people around me will understand what having an incurable illness feels like even when they’re not the ones reading it. However, at the end of the day, I cannot step in those people’s shoes and make them accept what is going on inside me. I am the first person that needs to educate my family, friends, ex-colleagues etc. I am the first one that has to tell them the same things over and over, and I will be the only one to know the truth about my own MS. I am my expert-patient and I will be the only one that will have to fight for my medical future, as no-one else can do it for me.

In the past I’ve said that having an illness like MS is a ‘lonely illness’. It really is, because there are no two people alike who have MS, so I need people to understand why I do the things I do (or don’t do), and I need them to accept and support me instead of judging me because of their preconceived and wrong ideas about my illness. So for that reason I am blogging the letter to those without MS, so they can learn about our life, our illness and our hopes, dreams and feelings. Continue reading

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself, girl…”

I am, and I will, no matter how far this illness will take me.

© 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.

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have, because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself girl…”

I am, and I will, no matter how far this illness will take me.

© 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.

MS News: May 2017

Image MS

MS in the media – 2017 Meeting American Academy of Neurology (AAN)

  1. Aubagio in people at risk of MS
  2. Cladribine
  3. Gilenya
  4. Lemtrada long-term data
  5. Lemtrada and black people
  6. Opicinumab
  7. Siponimod
  8. Importance of early effective treatment
  9. NEDA challenged
  10. Measuring disease activity in progressive MS
  11. Predicting risk of conversion to SPMS
  12. Risk factors for MS in children and teenagers

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MS News: April 2017

Research Image

Highlight!

  1. Canadian Study of MS-Prone Family Proves that in Rare Cases, Multiple Sclerosis is Inherited
  2. Large Family Study Strengthens Case for Inherited Multiple Sclerosis
  3. New Survey Finds Multiple Sclerosis Patients Struggle with Misdiagnosis and Invisible Symptoms

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MS News: March 2017

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Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017

  1. Society Releases Statement on American Health Care Act
  2. National MS Society Urges Lawmakers to Oppose American Health Care Act
  3. Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part D: Addressing
  4. Researchers find patients’ annual financial burden under Medicare Part D is ‘too much too soon’

 

New book by the honourable American/Irish author and friend Trevis Gleason!

  1. Chef Interrupted: Discovering Life’s Second Course in Ireland with Multiple Sclerosis

Highlight!

  1. Blood Diagnostic Test for Multiple Sclerosis to be Released in May 2017

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MS News: January 2017

clinicaltrials

Go red to Kiss Goodbye to MS campaign!

  1. Supporters in County Donegal asked to Help Kiss Goodbye to MS
  2. Supporters in county Longford asked to Help Kiss Goodbye to MS
  3. Co Leitrim people are being asked to help ‘Kiss Goodbye to MS’

Highlight!

  1. The top 10 drug launches of 2017
  2. The year in new drugs

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MS News: November 2016

why-to-go-for-clinical-trials-best-treatment-for-health-issues1

Because of #DonaldTrump’s shock election in the US and his insistence on scrapping Obamacare once in office, I’ve added some sites and articles dealing with insurance etc.

Highlight!

  1. Health Insurance and Medicare
  2. Dumping Obamacare without a better plan is cruel
  3. How Trump Plan To Gut Obamacare Will Take Down Medicare
  4. ‘Trumpcare’ Proposals Could Cripple the Healthcare System
  5. Even If Donald Trump Changed The FDA Drug Approval Process, Patients Wouldn’t Benefit
  6. Repealing Obamacare Would Give A Tax Cut To Millionaires, Like Donald Trump
  7. President Trump Could Derail Obamacare By Dropping Legal Appeal
  8. Insurers use high drug costs to deter some Obamacare patients, economist says
  9. Americans are freaking out about losing Obamacare

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MS News: October 2016

why-to-go-for-clinical-trials-best-treatment-for-health-issues1

Highlight!

  1. Influenza, Vaccinations, MS
  2. Brain cognitive exhaustion is real for people with Multiple Sclerosis

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What causes MS?

Image Central Nervous SystemNewly diagnosed people find this the most frustrating and problematic question about MS. Neurologists and other healthcare providers consider it just as difficult having to tell someone that there is no known cause or cure yet.

Needless to say, the race to understand what causes MS is ongoing, and this will eventually lead to more efficient treatments and hopefully, cure and prevention.

In MS, the central nervous system – the brain, spinal cord and optic nerves – is affected. Nerve cells in the brain send signals throughout the body to control everything that happens, like movement, sensation, memory, cognition, and speech.

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MS News: July 2016

MS image

Researchers at Queen’s University Belfast have begun a £2 million research programme to investigate reversing the damage caused by Multiple Sclerosis.

Highlight!

  1. Childhood MS: A guide for parents
  2. Queen’s University Belfast Awarded £2M in Bid to Reverse Myelin Damage in MS
  3. Exploring Multiple Sclerosis from the Inside

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★ MS Blog Living Like You, by Novartis ★

LLY image sponsored by Novartis Pharma AG

Sponsored by Novartis Pharma AG

My contributions on Novartis’s Living Like You website

Contributed to MS – No Filter videos on Living Like you


Novartis’s Living Like You posts are available in Dutch, Spanish, Italian and Arabic (see below). Since my posts are all written in English, not every post has been translated yet. 

Dutch

Spanish

Italian

Arabic


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorized use and duplication of this material without express and written permission from this blog’s author and owner are 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.

Positive MS News: August 2015

Bibiana Bielekova, MD, is the new director of UC's Waddell Center for Multiple Sclerosis and and associate professor of neurology. Reference Jan 06 "Findings".

Vitamin D research was once again a recurring news story this month, with more studies linking lack of vitamin D to MS.

Also widely reported was the news Novartis bought GlaxoSmithKline’s remaining rights to Ofatumumab, an investigational multiple sclerosis medicine, for up to $1 billion.

Highlight!

  1. Gene study finds link between multiple sclerosis and low vitamin D
  2. Gene study backs up link between vitamin D and multiple sclerosis risk
  3. Low levels of vitamin D may cause multiple sclerosis
  4. Vitamin D deficiency direct cause of multiple sclerosis (MS): Study

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Positive MS News: April 2015

kinex-clinical-trialsResearch news

  1. Miconazole and clobetasol may be effective as multiple sclerosis therapies
  2. Drug Derived From Sea Anemone Shows Promise Against Psoriasis, MS
  3. Novel Drug From Nature Shows Early Promise
  4. ‘Brainbow’ illuminates cellular connections
  5. MS Association of America releases 2015 multiple sclerosis research update
  6. B Vitamin Promising in Progressive Multiple Sclerosis
  7. Phenytoin protects against optical damage in multiple sclerosis
  8. Could Eczema Cream Be Used for Treating Multiple Sclerosis?
  9. URMC Start-up Takes Aim at Memory and Cognitive Problems
  10. Controversial stem cell treatment for multiple sclerosis
  11. Key Cytokine Discovery May Shape Future MS Treatment
  12. The UpBeat: One of the ‘super heroes’ encouraged by promising MS research
  13. Drugs that activate brain stem cells may reverse multiple sclerosis
  14. Novel Mechanism May Prevent Onset of MS in Immune Cells
  15. French firm announces multiple sclerosis drug breakthrough
  16. A Missing Subset in ME/CFS and Fibromyalgia Revealed? Take the Disease Course Survey
  17. Stem Cell Transplant Reduces Multiple Sclerosis Disease Activity
  18. Seizure Medication Reduced Optic Neuritis In Multiple Sclerosis
  19. Tisch MS Research Center Of New York Reports Early Improvement In Stem Cell Trial
  20. Public Release: 22-Apr-2015 Researchers discover new drugs to combat the root cause of multiple …
  21. Progressive MS Pipeline Slowly Filling With New, Experimental Therapies
  22. Important Multiple Sclerosis Research Grants Announced
  23. Promising New Therapy for Multiple Sclerosis Based on Placenta Cells

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