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Rare disease | The appeal of desperate parents: “Our daughter Lucia suffers unimaginable pain”

Two images of young Lucia

Two images of young Lucia
Facebook A smile for Lucia

They are desperate and just want to help their daughter Lucy, 19 years old, suffering from a rare disease: Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome. The appeal of some parents of Torrent through social networks have gone viral. The family has launched a campaign of crowfunding through GoFundMe to pay for a treatment in the United States to help alleviate the severe pain that he suffers.

Lucia’s nightmare dates back to when she was 11 years. The little girl suffered a fall where she hit her knee. This led him to suffer a strange disease: Reflex Sympathetic Dystrophy, which in turn led to a torsional dystonia with myoclonus (convulsive movement disorders). “Can you imagine living like this? It’s horrible … In fact to tell you that this syndrome is called ‘the suicide disease’“, relates his mother, Mercedes Roncero.

Lucia’s treatment in Spain has not had the expected results, so they had to look for one outside the country, specifically in Arkansas. Through this program they try to restore the central nervous system to reduce pain and increase mobility and “for the first time they are noticing an improvement.”

“You know how much our daughter suffers because she suffers unbearable pain 24 hours a day, 7 days a week, year after year for almost 10 years,” they report on their Facebook page where they report on the young woman’s condition.

Dear friends, many of you have already known about Lucía’s situation for several years and everything we have fought for …

Posted by A smile for LUCIA on Friday, February 26, 2021

“It feels like I’m burned”

The ordeal that this young woman from Torrent goes through has radically changed her life since her illness prevents her from walking, dressing, putting on shoes, washing, covering herself in bed or touching the areas that are currently affected, because suffers unimaginable pain 24 hours a day, seven days a week. “She feels like she’s burned out,” her parents report on Facebook.

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Lucia’s right leg is affected, as well as her back, neck, ribs and sternum, which are also undergoing these changes little by little. But the disease continues to spread through his body and his left arm is also being affected.

“She suffers from constant crises that are terribly painful and They cause him pain greater than an amputation, on the McGill pain scale his disease has a score of 46 out of 50. His life is an ordeal and his nights are endless “, they describe.

A smile for LUCÍA was created to help Lucia, a beautiful 19-year-old girl who suffers from an illness …

Posted by A smile for LUCIA on Tuesday, February 9, 2021

“Lucia has lost her life lying down all day, screaming and crying because of pain, insomnia and taking medications that a child should not take,” add her parents in a call for solidarity: “We need your help to change the life of our daughter”.

1 Comment

  • Thomas Crews MD

    My name is Thomas Crews and I am a board certified head and neck surgeon and treat many CRPS/ RSD patients for the last 6 years! I have many successes with pain modulation! I would be happy to communicate with you regarding your daughters condition! I would be happy to give you my opinions on my approach to treatment for this condition!

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