FRISCO, Texas — It’s known as the suicide disease, a rare neurological disorder that is incredibly painful for those who suffer with it.
One man in North Texas diagnosed with the disorder in 2015 has started a foundation aimed at helping others conquer this disease that the traditional medical community says has no cure.
His name is Philip Robert and he’s the kind of person who sees something that needs to be fixed and does his best to fix it. Some might say he’s a good Samaritan, but he said he’s just trying to share the joy he’s found in a treatment he believes saved his life.
Back in 2014, Robert was a full-time youth minister. While playing a routine game of dodgeball with his youth group he rolled his ankle, which left him with a partially torn ankle ligament.
That injury resulted in a large blood clot, which led to him suffering from a massive bi-lateral pulmonary embolism (PE), a condition in which one or more arteries in the lungs become blocked by a blood clot.
Robert explained that 10-30% of those who have a PE usually die, with 25% facing sudden death.
What started as a torn ligament Robert believed would be an easy recovery led him down a spiral of medical problems that ultimately resulted in him being diagnosed with complex regional pain syndrome (CRPS), better known as the suicide disease.
This rare neurological disorder is known as one of the most painful of all medical problems.
“It feels like you stepped in hot lava,” said Robert. “It’s like being burned from the inside.”
Robert’s battle with CRPS got worse after surgeries to fix his torn ankle and attempts to address the chronic blood clot in his femoral vein. He was experiencing excruciating pain in his back, stomach, pelvis, and head.
He says the simple acts of eating and drinking caused him immense pain. He often stuttered and suffered with the brain fog.
Less than a year after the dodgeball injury he says he wanted to die. The pain had progressed so rapidly and he himself had thoughts of suicide to relive him from the pain that just wasn’t going away.
“It’s just such an isolating disease,” said Robert. “I think that’s one of the reasons why it leads people to take their own life, because they see no hope or no escape. Frankly, I was at that point in June of 2016.”
After months of excruciating pain his wife Tracy was eager to find help.
“A sip of water would send him into agony,” she said. “I didn’t understand how someone could live like that.”
She was on a mission to help the man she loves get his life back. After searching for hours on Facebook she found a CRPS support group that led her to learning about a doctor in Arkansas who claimed to help people suffering with the disease go into remission.
The doctors name is Katinka Van der Merwe. After being so disappointed with traditional allopathic treatments Robert was skeptical but decided to take a leap of faith.
“I knew it was worth a try,” he said.
He ended up spending 10 weeks in Fayetteville, Arkansas, at Dr. Van der Merwe’s clinic in the summer of 2016. He says the treatment he received saved his life.
It was his finding a cure that worked for him and the multi-year traumatic experience that fueled him to share his success. His hope was that others would find it, too; the Burning Limb Foundation was born.
“After seeing the devastation caused by this terrible disease, I felt the need to help,” said Robert. He’s made it his mission to provide assistance to those suffering from chronic pain diseases, specifically physical trauma-related illnesses such as CPRS.
Since 2017 the foundation has raised and distributed over a half a million dollars to more than 170 recipients so they can receive the same treatment that has given him relief.
“The reason why I do this is so that I can see the hope turn on the lights in somebody’s when I hand over a check, or when they start to get better. You can’t put a price tag on that.” he said.
He’s proud of his foundation and claims it doesn't focus solely on the physical issues but also the emotional trauma, such as PTSD, that is often a byproduct of these illnesses and is never treated.
“We help individuals, their families and caregivers find their voice and funding, so that they won’t have to fight that battle alone and struggle to find the treatment they most desperately need,” he said.
Robert still lives with chronic pain every day. The damage caused by the clots in his leg destroyed the valves in a large number of the veins in his deep vein system, which has led to post-thrombotic syndrome. In its own right, it ranks with CRPS in terms of pain.
With the help from ongoing therapy at Dr. Van der Merwe’s clinic in Fayetteville, Arkansas, Robert is now in remission and better understands how to live with the disease.
“I still have a large mountain to climb and more surgeries ahead of me, but now I am on a mission,” he said.
If you’d like to make a donation to Robert’s cause you can find more information on the foundation at burninglimb.com.
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