A GRANDFATHER-of-two who was diagnosed with a rare blood cancer has spoken out about the devastating impact of the condition.

Sean Kennedy, 60, from Billingham, is now trying to find out whether exposure to chemicals could have contributed to the disease, which led to him having a stem cell transplant in 2019 after being told he could have months to live.

Mr Kennedy, who owns a micro-pub, is speaking out now to raise awareness about Rare Disease Day, which is marked on Monday, February 28.

He started to develop symptoms including abdominal pain and fatigue in 2012 and he was subsequently diagnosed with a myelodysplastic syndrome – also known as MDS.

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A rare blood cancer, the condition prevents sufferers from producing enough healthy blood cells.

Mr Kennedy has suffered a wide range of symptoms because of MDS but has managed the treatment thanks to the support of his wife Jan, 59, and daughter Claire, 36.

He said: “MDS lowers your immune system, so there were a whole host of consequences. I developed large mouth ulcers, while I also suffered with fatigue. I was also admitted to hospital on several occasions as I’ve been more prone to infections due to the condition.

“In 2019, I was told my condition had become critical and that I needed a stem cell transplant. I fortunately got a match from a worldwide database and had the procedure in October that year. Beforehand, I needed chemotherapy and that was incredibly difficult. It has just been a really intense battle.”

He is now in remission and has regular monitoring following a transplant in 2019.

He added:  “I’m over the moon about the transplant, particularly as it was difficult being told that I only had months to live. While my energy levels are still low, I’m more active these days and that’s positive. I also get a bit of brain fog now and then, which my friends and I refer to as ‘chemo brain’.

“It’s been tough, so I’m grateful for the support I’ve had. Jan in particular has been incredible, as she has had to do so much.

“While I’m looking positively to the future, I wanted to speak out on this so that more people understand how this kind of illness can affect you. Its impact has been massive and it is definitely something that needs to be discussed more.

“I also feel I deserve to find out why I contracted my illness and by speaking out try and help others who may have similar illnesses.

“People shouldn’t have to suffer alone as there’s help and support out there.”

Mr Kennedy has instructed legal experts at Irwin Mitchell to investigate whether his cancer could be linked to exposure to a type of chemical called benzene during his former job on-board a seismic research vessel tracing oil and gas under the sea bed.

With investigations ongoing he has joined forces with his legal team to raise awareness of his condition and the difficulties that he has faced.

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Emma Bell, the specialist workplace illness lawyer at Irwin Mitchell, said: “Exposure to harmful chemicals such as benzene can lead to debilitating and life-threatening diseases. We’re now supporting Sean to provide him with the answers he deserves regarding how he contracted cancer. 

“Sean and his family have been on an incredibly difficult journey over the past few years and he has bravely fought this rare condition at every turn.

“It’s been fantastic to see his health improve and we hope Sean is able to push forward and enjoy life. However, we also felt it was important to speak out about MDS and highlight the impact that it can have.

“Rare Disease Day is the ideal time to do that and we hope that this leads to a greater understanding of the condition.”

Rare Disease Day on  February 28 aims to raise awareness of the symptoms of rare diseases and improve treatment.

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