A father who was diagnosed with a disease that affects “three in a million” people after losing 40kg has made a miraculous recovery to the point where he can walk again. Martin Williams, 52, suddenly started losing function in his legs, gradually lost control of his arms and hands, and had to feed his wife Elena, 44, who works at a bank. I had to.
Doctors initially thought Martin had a vitamin B deficiency or Guillain-Barre syndrome, an extremely rare and serious condition that affects the nerves. However, after two MRIs, a PET scan and blood tests, the father of two was diagnosed with POEMS syndrome. POEMS syndrome is a rare type of plasma cell disorder that can affect multiple systems in the body.
Martin had to use a wheelchair and relied on 24-hour care. He dropped from 15 pounds 10 pounds to 9 pounds 6 pounds because of the conditions.
Doctors gave Martin five months of chemotherapy to kill the two tumors causing his problems, then performed a stem cell transplant to replace the damaged cells with healthy ones. Now, the father can stand and walk for the first time and has started working again.
Martin, who works at a supermarket in Newmarket, Suffolk, said: “I lost control of my hands and arms. I couldn’t eat or defecate. It was quite a dramatic deterioration. I needed 24/7 care. I did,” he said.
“Every day I felt function being taken away from my body, to the point where I couldn’t even remove a box of tissues. Function was taken away from me and I didn’t know how to get it back.
“What they did was miraculous. They took my healthy blood cells and used them to replace the damaged ones. It’s incredible. I was able to stand and walk for the first time in a while.
“I drove an automatic car again in December.”
Martin first noticed something was wrong in February 2017. he said: I had trouble walking. His toes went numb. He gradually lost his ability. ”
He went to see a doctor and was told he might have a vitamin B deficiency. But by March 2017, his condition worsened.
he said: “I couldn’t walk more than a few hundred meters. My legs looked swollen. I was losing definition in my legs.”
Despite tests, doctors were unable to determine what was wrong with Martin. “He did not recover and was hospitalized,” Martin said.
“I cut back on my hours and had to quit my job completely in August 2017 because I couldn’t function anymore. I told my wife it wasn’t safe for me to drive anymore. .
“I was sitting at the dinner table and said, ‘That’s what’s happening to my hands.'”
In October 2017, he was finally diagnosed with POEMS. “Doctors discovered two tumors that were actively producing harmful proteins that attacked my peripheral nervous system,” Martin said.
“The tumor was in two of my ribs. I had to have them removed. The diagnosis was a relief. They knew how to treat it. Treatment consisted of five months of chemotherapy. I was told that I would have to be transplanted.
“I wanted them to keep doing that. As an independent person, as someone who has traveled all over the world, it was just humiliating to have someone else eat and use your bathroom.
“My fear was that I would be dependent on 24/7 care for the rest of my life.”
Martin received the transplant in April 2018. “Before the transplant, I told her friend, ‘If he doesn’t make it out alive, please take care of his wife and child,'” she said.
“My two girls were my biggest worry. My youngest was 2 at the time. There was a time when I didn’t know if I was going to see her grow beyond 2. .”
He was told that the disease caused his diaphragm to close, making him unable to breathe and potentially causing death. He said: “People thought they would never see me again.
“There was a time when I didn’t even know if I was going to survive.”
In November 2017, Martin began five rounds of chemotherapy aimed at destroying two tumors that were making it difficult for him to control his body. In April of the following year, he underwent a “miraculous” stem cell transplant, and his symptoms gradually improved.
Within a few weeks, Martin regained control of his body. he said: “I had the use of my fingers again. It was a huge relief.
“I was able to grab 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 now doing things I wouldn’t have done otherwise, and I’m actually pretty good at it. My condition will never go away, but it can be treated.
“I have blood tests every year. I continue to be monitored, but there is no treatment. I use an ankle brace, so I can walk short distances, but not long distances. You can’t run or do any sports activities.”
“It’s hard to lift heavy things, and I can’t squat on the floor. I probably only have 20% of my leg strength left.
“I am planning to go on a trip in the summer, but I will have to use a scooter for day trips. Walking up hills is also difficult.
“But I will do what I can, and if I can’t, I don’t mind asking for help.”
