Home Health Dad who was told he needed vitamins actually had rare 'three in...

Dad who was told he needed vitamins actually had rare 'three in a million' disease

A dad who was diagnosed with a “three in a million” disease after losing 40kg has made a miracle recovery to be able to walk again.

Martin Williams, 52, suddenly started to lose function in his legs and gradually lost the ability to control his arms and hands and had to be fed by his wife Elena, 44, who works for a bank.

Doctors initially thought Martin had a vitamin B deficiency or Guillain-Barré syndrome – a very rare and serious condition that affects the nerves.

But following two MRIs and pet scan and blood tests, the dad-of-two was diagnosed with POEMS syndrome – a rare type of plasma cell disorder that can affect multiple systems in the body.

Martin had to use a wheelchair and relied on around the clock care.

He dropped from 15st 10lb to 9st 6lb because of the condition.

Doctors treated Martin with five months of chemotherapy to kill the two tumours causing the problems, followed by a stem cell transplant – which replaced his damaged cells with healthy ones.

Now the dad is able to stand and walk for the first time and has started working again.

Martin, a supermarket worker from Newmarket, Suffolk, said: “I lost the ability to control my hands and arms. I couldn’t feed or relieve myself.

“It was quite a dramatic decline. I needed 24/7 care.

“Each day I felt function leaving my body, to the point where I couldn’t take a tissue of a box.

“My function was taken away from me and I didn’t know how to get it back.

“It’s miraculous what they did. They took my healthy blood cells and used them to replace the damaged ones. It’s incredible.

“I managed to stand and walk for the first time in ages.

“In December I drove again using an automatic car.”

Martin first noticed something was wrong in February 2017.

He said: “I started to feel like my body was falling under me.

“I had problems walking. My toes went numb. I gradually lost function.”

He went to the doctors who suggested he might have a Vitamin B deficiency.

But by March 2017, his condition had worsened.

He said: “I couldn’t walk a few hundred yards.

“My legs seemed puffy. I was losing definition in my legs.”

Despite testing, doctors couldn’t work out what was wrong with Martin.

Martin said: “I didn’t recover and I was admitted to hospital.

“I cut my hours down and had to stop working entirely in August 2017 because I couldn’t function.

“I told my wife I was no longer safe to drive our car.

“I was sat at the dinner table and I said, ‘it’s happening to my hands’.”

In October 2017 he was finally diagnosed with POEMS.

Martin said: “The doctors found two tumours actively producing a harmful protein that was attacking my peripheral nervous system. 

“The tumours were in two of my ribs. I had to get them removed.

“The diagnosis was a relief.

“They knew how to treat it. I was told the treatment would be five months of chemotherapy and a transplant.

“I wanted them to get on with it.

“As someone who’s independent, who’s been around the world, being fed and toileted by others was just humiliating.

“My terror was being reliant on 24/7 care for the rest of my life.”

Martin had the transplant in April 2018.

He said: “Before the transplant, I spoke to my friend and said: ‘If I don’t make it out of this alive, please look after my wife and kids’.

“My two girls were my biggest worry.

“My youngest was two years old at the time. There was a point where I didn’t know if I was going to see her grow up beyond two.”

He was told the disease might shut down his diaphragm and kill him by making it impossible for him to breathe.

He said: “People thought they’d never see me again.

“There was a point where I didn’t know if I was gonna survive or not.”

In November 2017, Martin started five rounds of chemotherapy targeted at destroying the two tumours that were making it hard for him to control his body.

In April the following year, he underwent a “miraculous” stem cell transplant that saw his condition gradually improve.

Within weeks, Martin’s control of his body returned.

He said: “I could use my fingers again. It was a massive relief.

“I could pick up a spoon. I call it my ‘cornflake moment’.”

Martin is now able to stand and walk and returned to work in January 2019.

He said: “I’m doing something now I wouldn’t have done otherwise — and I’m actually quite good at it.

“My condition will never go away but it can be treated.

“I have annual blood tests. There’s ongoing monitoring, but no medical treatment.

“I use ankle support, so I can walk short distances but not go on long walks. I also can’t run or do sporting activities.

“It’s difficult for me to lift heavy things up and I can’t crouch down on the floor.

“My legs probably have 20% of the strength they should.

“We’re going away in the summer but I’ll have to use my mobility scooter for day trips.

“Even walking up slopes is difficult.

“But if I can do something I’ll do it, if I can’t, I don’t mind asking for help”.


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