Martin Williams, 52, suddenly started losing function in his legs and gradually lost control of his arms and hands, forcing his wife Elena to feed him.
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 and gradually lost control of his arms and hands, leaving him to feed his wife Elena, 44, who works at a bank. Doctors initially thought Martin might have 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. Due to the conditions, he dropped from 15 pounds 10 pounds to 9 pounds 6 pounds.
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 my body’s functions disappearing. It was to the point where I couldn’t even reach for a box of tissues. My functions were taken away from me and I didn’t know how to get them back. What they did was a miracle. 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 long time, and in December I drove an automatic again.” Martin first noticed something strange in February 2017. “I started to feel like my body was falling down. It was difficult to walk. My toes became numb. Gradually I lost function.”
He went to see a doctor and was told he might have a vitamin B deficiency. But by March 2017, his condition worsened.
“I couldn’t walk more than a few hundred meters. My legs looked swollen. I was losing feeling in them,” he said. Despite tests, doctors were unable to determine what was wrong with Martin.
Martin said: “He did not recover and was hospitalized. I cut back on my hours and had to stop working completely in August 2017 as I was no longer able to function. I told my wife that I was no longer driving. “I told them it wasn’t safe,” he said. 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 that I had two tumors that were actively producing harmful proteins that attacked my peripheral nervous system,” Martin said. “The tumors were in two of my ribs and had to be removed. I had to. The diagnosis was a relief. The doctors knew the cure.” I was told that my treatment would be 5 months of chemotherapy and a transplant.
“I wanted them to get over it. As someone who is independent and has traveled all over the world, it was just humiliating to have someone else eat and use the toilet. Martin received the transplant in April 2018.
“Before the transplant, I told my friend, ‘If I don’t make it out alive, please take care of my wife and children.’ My two girls were my biggest worry. My youngest I was 2 years old at the time, and there was a time when I didn’t know if I would ever see her grow beyond 2 years old. ”
He was told that the disease caused his diaphragm to close, making him unable to breathe and potentially causing death. “People thought they would never see me again. There were times when I didn’t know if I would survive,” he said. 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. “I got the use of my fingers again, which was such a relief. I was able to grab a spoon. I call it my ‘cornflake moment,'” he said. .
Martin is now able to stand and walk and returned to work in January 2019. He said: “I’m doing things now that I wouldn’t have done otherwise, and I’m actually pretty good at it. My symptoms will never go away.”But treatments are possible. Although I have ongoing blood tests, there is no cure.
“I have ankle supports, so I can walk short distances, but not long distances. I also can’t run or play sports. It’s hard to lift heavy things, and I have to squat on the floor. I probably only have 20% of my original strength left in my legs. I’m planning on traveling in the summer and will have to use a mobility scooter for day trips.
“Walking up a hill is difficult, but if I can, I’ll do it, and if I can’t, I don’t mind asking for help.”
