Support, Information, Awareness & Campaigns for those affected by MDS

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So, who will be running for #TeamMDS? What time will you do? Any volunteers for the day? ... See MoreSee Less

At the Cabbage Patch 10 we are hugely proud of the charities we support. We have raised over £110,000 for charity over the years.

This year we are as ever supporting the fantastic Clarendon School, and also MDS Patient Support Group - based at Kings Hospital.

MDS - STANDS FOR MYELODISPLASTIC SYNDROME.

THROUGH OUR RACE WE ARE HOPING THIS YEAR TO REALLY HELP MYELODISPLASTIC SYNDROME AND MDS PATIENT SUPPORT GROUP BE ROCKETED OUT THERE INTO THE WORLD, SO THAT PEOPLE DON'T HAVE TO ASK AGAIN WHAT MDS IS.

Please take the time to read this below and learn.

Our Race Director has been recently made the PATRON of this charity and we are hugely proud to support them and this year there will be a LITTLE SURPRISE WE HOPE IN THE PUB FOR YOU JUST BEFORE PRIZE GIVING ... PLEASE DO COME AND SEE .......

“MDS is a blood cancer that devastates lives and ends a good many more. It’s not atrivial illness but because a great many of those diagnosed are older it doesn’t get the public exposure and the sympathy vote that many other diseases achieve.

On average, there are 3000 people each year in the UK who get this dreadful diagnosis but of these it is mercifully rare in children, maybe only half a dozen.

It is likely that a larger percentage of the population will exhibit signs of MDS but that many only get diagnosed either by accident or because of some emergency.

MDS patients often deal with overwhelming fatigue, a propensity to bruise and bleed easily, frequent infections (some life threatening in themselves) and in higher risk cases it can develop into aggressive leukaemia’s which are frequently fatal. THERE IS NO CURE – other than a bone transplant, and even then it is only for a small number of viable patients. Of the current treatments most simply alleviate symptoms (blood and platelet transfusions) or slow down the disease’s progression.

Supporting patients at a time of enormous upset is what MDS UK does. Ultimately, we hope to find a less drastic cure than a bone marrow transplant. But for that we will need enormous financial support.”

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MDS UK Patient Support Group shared Anthony Nolan's photo. ... See MoreSee Less

'Raks was honestly the most truly amazing, smiliest, sociable person that you’d ever meet in your whole life. Every room would light up when he entered.

In June 2013, a bone marrow biopsy showed that he had a really rare blood disorder called myelodysplasia.

It’s a really rare condition which normally affects people in their 60s and over – and even then, it’s something like a one in a hundred thousand chance of contracting the disorder.

We were told then that he’d need to have a stem cell transplant.

We soon realised that it would be more difficult to find a perfect match for Raks because of his ethnic background. Initially, his brother and sister were checked and neither one was match. At the same time, Mr Cawley, his consultant, had told us about the worldwide search for a donor for Raks.

In the whole world, he had one appropriate 10/10 match – a female donor in the USA. He also had two 8/10 matches, one from Germany and another from South Africa.

They began the process of trying to get in touch with the 10/10 match. It felt like forever, and in the end when they finally got in touch with her, for some reason or another she couldn’t donate – we never found out if it was because she didn’t want to, or if her circumstances had changed.

Next, they tried to contact the two 8/10 matches, and the donor from South Africa – a 37-year-old female – was willing to donate. She was only an 8/10 match, which we knew wasn't ideal.

It was so scary, you’re really pinning all your hope on one person. This process began in November 2013, and we didn’t get an all-clear for him to have the transplant until April 2014.

By then, he had gotten a lot worse and was suffering from a severe infection and couldn’t go ahead with the transplant.

We couldn’t help but think if there had been more matches on the register, if it had been quicker to contact them, would the outcome have been different?

On the morning of the 21st December, I had a missed call at about 07:50 from Raks. He would never ring me that early, so things didn’t seem right and I called him straight back.

He didn’t know what was happening. His oxygen levels had dropped to 50% overnight, where they would normally be about 98-100%. His doctors were really worried, and he said to me, ‘I’m really scared’.

I said to him that I’d be there as quickly as I could.

On the journey, my phone rang and I missed it – it was from the hospital. I tried to call them back and there was no answer. Addenbrooke’s is like a big campus, almost like a small village. I got to the car park, and I called them again.

They said, ‘Mrs Shah, are you coming in?’

I said, ‘Tell Raks I won’t be long. Is he okay?’.

They said that he wasn’t okay.

‘Is he going to be okay? Is he… still here?’

The doctor said, ‘No, he’s not. I’m so sorry’.

It still feels unreal… I can’t put it into words. It’s just so unreal, and I still feel like I’m in complete shock. I can’t believe how all of this happened. It was so quick at the end. I’d only just spoken to him. I feel sick that I didn’t make it to see him, that he was alone.

For someone as fit and healthy as Raks, I just couldn’t believe this had happened.

We had never even discussed the prospect of him not making it. He was too full of life for him to not be here now.

I want to raise awareness of stem cell donation among people from ethnic minority backgrounds because no person should be faced with the prospect of being told that they have no match on the register.

It’s the hope that’s so important. Even the fact that we had an 8/10 match – that lady gave us so much hope. I really want to write to her and say thank you.

Growing up, I want my kids to embody Raks’ confidence, and his caring nature. He was so caring to everybody.

He was someone people always wanted to be around. I want my children to be like him – infectious people that people love to be around. I want them to be like him – cheeky, sociable and chilled out.

Raks always has a life’s too short attitude to life. Sadly, his life was short, but people always say he lived 10 lifetimes in his short life. I want my kids to do the same – fill their lives with travel, sports and never to waste any time. I want them to be go-getters.

I decided to start fundraising for Anthony Nolan in 2015. It means that family, friends and people who care about myself and Raks can all get involved.

People have really gone out of their comfort zones and it’s brilliant!

My challenge is climbing Mt Kilimanjaro in September.

Me and Raks always dreamt of climbing it together one day. I’ve done some climbing before but nothing of this magnitude.

It’s my challenge and I want to step out of my comfort zone. I’m so nervous and apprehensive but hugely excited. I’m doing it alone, but I also know that he’ll be there with me too. It’s going to be a hugely emotionally and physically exhausting experience.

Joining the register means giving people hope.

Even if you never donate, by signing up, you are giving people hope. All we had was hope, and after Raks died I felt hopeless.

It’s massively important to me to help do that for someone else – give them hope.'

- Poonam

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MDS UK Patient Support Group shared Bearcat Running Club's post. ... See MoreSee Less

SERIOUSLY BIG THANK YOU FROM ME AND MDS PATIENT SUPPORT GROUP.

£1101.25 in 6 days PLUS £325.00 yesterday at the Theatre.

Thank you, it was undoubtedly the hardest challenge I have done, not because of the swimming necessarily but because I had the wrong wetsuit on and I got cold, REALLY COLD after just 1 km - and yes there were other people swimming WITHOUT a wetsuit, and I was shivering my bits off and they thought it was tropical - I did later learn they were Channel Swimmers.

By stop 1 my hands were totally numb - thank goodness I had taken my gloves so put them on - putting swimming gloves on when hands are numb is nigh on impossible - thank you to the lady who did that for me and adjusted my hat - poor woman, I just accosted her.

My teeth were chattering under water and above, my hips solidified and I was like a very grumpy toddler internally. Externally of course I was projecting "NO, I'M FINE!!!" Except at 10k (second stop out of 4) It appears my attempts to disguise the shivering didn't work (they can ask you to stop if they are worried about you) so I got some rather royal treatment - ribena x 2, cliff bars, and the loan of a coat but then of course I had to bloomin' get back IN! Limmer not happy but didn't want to be told to stop so acting like I was loving every minute of it.

By stop 3 I was doubting I would do it, I stopped for around 10 minutes and borrowed another coat and had to have a serious chat with myself!! Getting back in that last time was not FUNNY and I think I was swimming backwards at this point. The marshal was very nice to me and I felt a real plonker as NOBODY, I mean NOBODY else was having a problem! It must be the ginger or maybe I am just a wimp!

The event itself is very well run, tons of canoes looking out for you, plenty of food and drink, and the route was stunning what you see of it, baring in mind your head is down doing crawl for the duration.

There was even a man who did BUTTERFLY for the WHOLE THING.

At the end I was met by Russell Cook and his wonderful wife (MDS Patient Support Group Deputy Chairman and friend), which was a JOY. So great to have their great support, appreciation and hot chocolate - so lovely.

And THEN ... just as I was about to go home WHO SHOULD APPEAR, BUT DONNA AND YENZ - WELL BLOW ME DOWN! Had a little cry as Donna came HURTLING towards me - they had only bloomin' cycled there! IT TOTALLY MADE MY DAY, THANK YOU!

Would I do it again ......... NO I BLOOMIN' WOULDN'T ... so please remind me of how many times I thought to myself "I REALLY HATE THIS!" when my finger hovers over the entry button next year. I DIDN'T ENJOY IT AT ALL .... but then of course you forget.... but this one may take some time ...

Thank you again for all support financial and friendship wise. I know that I am a very lucky person.

Its now 5.28pm - goodnight.

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Support for the Group

The MDS UK Patient Support Group is affiliated with the UK MDS Forum, the foremost UK specialists organisation focused upon MDS, providing information and advice on the status and progress with MDS research and treatment in the UK, as well as the MDS Foundation, Inc, based in the USA. The MDS UK Patient Support Group is also supported by major pharmaceutical companies and other organisations.

The MDS UK Patient Support Group is a founding member of the MDS Alliance, the international umbrella group for all national MDS support groups. The MDS Alliance is dedicated to sharing and improving MDS information and awareness between patients, globally.MDS UK Patient Support Group is a registered charity. Reg Charity No: 1145214

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