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The Positive About MS story: Where, When & How?

Kaz Laljee,

Category: Stories

It was January 2007 and my diagnosis of Primary Progressive Multiple Sclerosis (PPMS) was official. It was rubber-stamped with a letter I received from my consultant.

I was actually relieved, as there were so many things going wrong with my body and there was no explanation for it. So, to be finally given a name for what was happening was a relief!

So, what next? I did what everyone does when they don’t know what something means: they google it!

This was good in the respect that, it helped me understand what multiple sclerosis is. However, it was actually pretty depressing! The general message was… Well, you have MS, so it’s time to hang up your boots and that life was over. This message seemed to be echoed everywhere I turned; whether it would be on TV, the news or leaflets that I read. This was the message I continued to hear for the next couple of years.

I just didn’t see this as being right, I always saw myself as someone who was relatively strong-willed and not easily influenced by what I read or see. I also thought there should be some sort of positive message too – it can’t just be doom and gloom. I couldn’t believe that anyone diagnosed with multiple sclerosis would have to read and go through this, it was just a negative message. There was no positivity and I didn’t think that was fair. Yes, I may have multiple sclerosis, but that doesn’t mean that my life is over. It was at this point that I thought to myself, something needs to be done!

What to do?

So, partly out of frustration and partly just to put my thoughts on paper, over the next 6 to 12 months I started to write things on my laptop. Every time I thought of or saw something related to MS. I wrote how it made me feel and the ideas it gave me of what I think should be done. One day I realised this had amassed to about 30 pages. I then thought it would be great if I could share this with other people with MS, in particular, people who had recently been diagnosed with the condition.

I found a web developer and basically sent him all this information with lots of pictures and said I would like to put this online and this website will be called, ‘Positive about MS’, with the tagline, ‘taking a can-do and positive approach to the condition multiple sclerosis’. So, in January 2011 Positive About MS was created.

The aim of Positive About MS

The aim was just to help one more person out there with Multiple Sclerosis and help them take a can-do and positive approach to this condition.

Not all positive

Of course, the website is called Positive About MS, but I am realistic at the same time. MS is obviously not a lifestyle choice that anyone would make. I even have a page on the website called, ‘The Bad Days’ where I talk about how it’s not easy and the difficulties people affected by MS face.

Once again, the aim of the website was to balance the scales, as it currently seems focused on the negative. Yes, there is a need to have leaflets and information highlighting what the condition is and how it is likely to progress. But there should also be a duty of care or something to tell people about what you can do rather than what you cannot.

Unexpected

At the time, the best way I could publicise and promote the website, was to tell people about it. But apart from telling close friends & family and emailing people I knew, it was hard to reach out to all the people who are affected by MS. So, I decided to put my Marketing background into use and used a relatively new phenomenon called social media to promote it. At the time, I had the time on my hands, due to recently being retired on ill-health grounds from my Management role and I knew it wouldn’t cost me anything.

I set up the channels across the main social media platforms under the name @PositiveAboutMS and wanted to see who else is positive about MS. I was pleasantly surprised to see that most people actually are and this negativity, doom and gloom is not really representative of all the people who actually have the condition.

The response to the website was unexpectedly HUGE. I initially thought and hoped that maybe someone else in Salford or Manchester would benefit from the website, but when I saw the traffic and the communications we were getting, I realised it wasn’t just Salford or the UK; people from all around the world were using it and benefiting from it!

Where is Positive About MS now?

Now, just over six years on from our journey, Positive About MS has a community of about 20,000 followers and is still growing. Demand is increasing for the services we provide and more is required of us. There is an expectation that Positive About MS adds further value and is seen as an information source to the MS community. I personally see this as a responsibility and also a recognition and acknowledgement of the word you do.

I suppose what started off as a hobby has now developed into a mini organisation. I am often requested to come and speak on the subject of multiple sclerosis at events, on the radio, local press, at workplaces the NHS and even the BBC J

In addition, as part of Positive About MS, we are always thrilled to work in collaboration with other organisations, with the aim of helping people affected by MS.

The Future of Positive About MS

In all honesty, I didn’t really see Positive About MS as an organisation or something formal; it was more of a hobby that I was interested in and wanted to tell people about.

To see it now on the verge of charity/community organisational status is very humbling. It’s just amazing to see that so many people can benefit from Positive About MS, and we are now looking at ways to expand the organisation, so we can add even more value to the MS community.

Kaz Laljee is the founder of Positive About MS. To find out more about Positive About MS, visit the website www.positiveaboutms.com, or search Positive About MS on Facebook, Instagram and Twitter.

GZEMEA.MS.17.02.0053f

 

Approved: April 2017

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