Viral | “I thought I was going to die”: US woman went from wheelchair to walk again after suffering from rare disease | POEMS syndrome | YouTube | nnda nnrt | STORIES

Daphne Jones is a woman of U.S that, to their 52 years of life in which she had the fortune to become a mother, grandmother and even a twin sister, enjoyed unwavering health until 2018 when did you start to feel back pains, swelling Y itchy hands and feet. His symptoms only got worse when he noticed May 2019 that something bad happened to him when he could not perform his tasks as elementary teacher.

“I felt like I was walking on the sand, and I felt pain in my feet. I felt that my back looked like a rubber band “, He said Jones, originally from the city of Maumee, located in Lucas County, in Ohio, to the television FOX 8 about the situation that forced her to visit the emergency room of a hospital near her home, where in a few hours the doctors gave her devastating news that left her in shock: they had diagnosed metastatic cancer.

Subsequent tests revealed that the patient had a collapsed lung and a lacerated liver. “I didn’t feel any of those things. They just kept giving me more and more tests, telling me that I had injuries all over my body. We don’t know what was going on, but let’s start with radiation therapies Y chemotherapy”the woman recalled of this daunting diagnosis which was only the first of many he received.

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A DIAGNOSTIC THAT CHANGED HER LIFE

On your journey to unravel your medical mystery, Daphne Jones consulted almost twenty doctors and specialists, of which he received 13 different diagnoses that ran from mushrooms, myeloma until multiple sclerosis. “I saw many doctors, I did not know what to do. I thought I was going to die. They just didn’t know what it was I had. “added the woman, that in July last year her symptoms got so bad that she ended up in a Wheelchair.

“My left side went limp. I got to a point where I was dropping things, I couldn’t feed myself. He could no longer use his fork. I was very scared since I thought I was going to stay paralytic”, he specified Joneswhose story was about to take a 180 degree turn when his GP referred her to Cleveland Clinic where he met Dr. Jack Khouri, a hematologist / oncologist specializing in Cancer and blood diseases.

For the expert, what Daphne suffered from was not a medical mystery as cataloged by his colleagues and that when he saw her, in fact “I already knew what his diagnosis was”. No era ni Cancer, ni multiple sclerosis nor any of the aforementioned diseases but of the Polyneuropathy, Organomegaly, Endocrinopathy, Protein M and Skin Syndrome (POEMS, for its acronym in English), a strange plasma cell disorder.

This disorder causes you to be cells, which are an important part of the immune system, they become dysfunctional, manifesting themselves in the symptoms that Jones experimented along with a neuropathy. Back then, his vascular endothelial growth factor (VEGF, for its acronym in English) –which is the measure of a type of protein that stimulates the blood vessel formation– was five times higher than normal levels.

“With his liver and spleen enlarging, as well as the hardening of his bones… putting all those things together… everything was consistent with the POEMS syndrome”, he specified Khouri who stressed that this disease is so rare that he does not see more than three people a year who suffer from it in his office in the Clevelenad Clinic since it is not only rare, but extremely difficult to diagnose due to the different symptoms it presents.

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A SECOND CHANCE

Jones stated that after finally knowing what it was she had, she felt relieved but still fearful because she had never heard of POEMS syndrome. His treatment consisted of various medications used to treat myeloma, a Cancer of the plasma cells, and in the first month he began to feel a little better, gradually regaining movement in his hands and feet, and leaving his body aches behind.

In the third month of his treatmentHis fingers – which had become numb – began to relax and after six or seven months, he was able to stand up and walk a little. With each visit to the Dr. Khouri, the condition of Daphne it improves more and more. “I was so relieved. I was so desperate. Did not want to stay paralytic. I wanted all of this to end soon and to return to teaching, so I gave everything I had to feel normal again “, he said.

Actually, Daphne “It’s almost 100 percent”, but you still need to use a walker to go large distances. “I am walking normally. Now I do everything without help “she added, noting that she returned to work as an office administrator for her local church. Regarding your recovery process, the Dr. Khouri notes that “Exceeded their expectations” since it takes most of them at least six months to three years to see results as encouraging as hers.

While you will not need medication for the rest of your life, it is likely that you will eventually need what is called a autologous hematopoietic stem cell transplantation (known generically as bone marrow transplant) that will put into remission for several years síndrome POEMS suffering. But Jones He does not sit idly by and knows that there is still a lot of work to be done in his long journey to overcome this strange disease.