This Mom Of 3 Was Diagnosed With A Very Rare Neurological Disorder Also Known As “Suicide Disease”
Royse City, Texas. Two years ago, Meagan Alford was diagnosed with complex regional pain syndrome (CRPS)– also referred to as “suicide disease.”
Now, the wife and mother of three has launched a GoFundMe to share her story and ask for financial support in her CRPS battle.
According to the Spero Clinic, “CRPS is ranked among the most painful diseases and medical problems, and is often referred to as the ‘suicide disease’ because there is technically no ‘cure’ and limited effective treatments.”
CRPS is a very rare neurological disorder that, according to the Mayo Clinic, “typically develops after an injury, a surgery, a stroke or a heart attack.” This is precisely what happened to Meagan.
“In September of 2019, I broke my back cooking. Yes, cooking! It is still baffling to this day,” Meagan wrote, “I had a 360 fusion and was told I would be back up and running within three months. Instead, I woke up from surgery with an intense burning sensation in my hip.”
Meagan compared the burning to holding two red-hot metal poles after being in a fire pit for hours. Still, her doctors believed that the pain was due to growing discomfort.
“The doctors told us the pain was because I grew an inch due to the spacer. They said do not worry about it and that it would stop hurting eventually,” Meagan recalled.
Well, the pain continued, and, sixteen months after experiencing her first burning sensation, Meagan was diagnosed with CRPS.
YouTube; pictured above is Meagan
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“CRPS is a condition associated with the imbalance and malfunction of the autonomic nervous system. Medically speaking, it is the most painful disease known to man– rating higher than both childbirth and amputation on the McGill Pain Index,” Meagan explained.
“Many people who have CRPS, including myself, describe it as feeling like they are literally being burned alive. CRPS obviously leads to depression, anxiety, and PTSD, and a high number of those diagnosed complete suicide due to the chronic pain and loss of function,” Meagan continued.
After Meagan’s surgery, her nervous and immune system “shut down” and reset incorrectly. Afterward, her nerve signals began to be mistranslated as “extreme and insurmountable pain.”
Initially, Meagan’s burning sensations were concentrated in her hip. Although, CRPS does have the ability to spread in some people.
Unfortunately, Meagan’s CRPS has spread throughout her body and now affects various areas– including her left hip, left calf, left foot, left hand, left wrist, right calf, right foot, right hand, and face/eyes.
“I have undergone thirty-three different surgeries and procedures since being diagnosed with CRPS. I have also spent the last two years trying every therapy available. But, unfortunately, nothing has made a difference in my pain and function,” Meagan said. She also noted that the therapies are all very costly.
Throughout Meagan’s taxing battle, she has worked to maintain hope. She has always loved makeup, and Meagan even created a Youtube channel to share her makeup creations and CRPS journey. She is also thankful for her husband and three children remaining by her side throughout her journey.
“They have all been so amazing and helpful these past two years!” Meagan said. Still, she misses being able to enjoy time with her family. Before her CRPS diagnosis, Meagan was an avid hiker, beach-goer, and dancer.
“CRPS has made me bed-ridden often, so I do not get to spend as much time with my family. It makes me incredibly sad,” Meagan said. Finally, though, Meagan believes she may have found a viable treatment option that can give her back her life.
“We have found a treatment that has succeeded in putting CRPS into permanent remission,” Meagan explained.
The treatment would occur at the Spero Clinic, a holistic medical treatment center located in Arkansas. The center is led by Dr. Katinka van der Merwe, a renowned quantum neurology nerve rehabilitation specialist.
The only hitch in Meagan’s plan, though, is the cost.
“The Spero Clinic does not accept most insurances and is extremely expensive! It costs roughly four to six thousand a week for treatment, living expenses, and so on,” Meagan said.
Despite these astronomical costs, she is determined to get this treatment and return to her everyday life.
So far, Meagan’s GoFundMe has raised just over two thousand and seven hundred dollars from forty donors. Still, the campaign has a long way to go before reaching its goal of one hundred thousand dollars.
“Thank you for taking the time to read this, let alone donate any money. You have no idea how appreciative I am,” Meagan said.
To share Meagan’s story, stay updated on her journey, or donate to her treatment costs, visit the GoFundMe link here.
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