Rare disease hurts like hell: Elena (26) is in more pain than an amputation

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Elena from Cologne loves nature, animals and outdoor activities. But for over four years she has hardly been able to enjoy these things. The 26-year-old lives in constant pain. She suffers from a neurological dysfunction of the central nervous system, Complex Regional Pain Syndrome (CRPS). The German woman has to endure hellish pain every day, according to an appeal from Go Fund Me for donations from her friends.

It all started while mountain biking in the summer of 2018. Elena injured her left ankle. The exact cause of the rare chronic disease is unclear. But like Elena, it is usually caused by trauma.

“Persistent pain around the clock”

“An initial prickling sensation in the left ankle and lower leg, which only occurred during exertion, turned over the years into persistent pain 24 hours a day, which doctors classify as more severe than amputation or childbirth pain,” says Ramon Recktenwald’s appeal for donations .

There are also accompanying symptoms. Elena struggles with depression, anxiety disorders, panic attacks, migraines and chronic fatigue. “Elena has already undergone all conceivable therapies and is considered completely cured,” the call for donations reads. The German therefore even considered having her leg amputated.

A special clinic in the US should help

But then there was a glimmer of hope: a special clinic in the US. The fundraising campaign has been started for this purpose, which has so far raised more than 90,000 euros. “The clinic offers patients with chronic pain a tailor-made treatment concept that is unique in the world,” says the Go-Fund-Me. But the trip to the Spero Clinic in Arkansas turned into a nightmare.

“Elena’s pain level had already worsened significantly at the beginning of therapy, which is due to the extreme stress and busy therapy schedule,” reads a Jan. 8 update. This is not unusual, but should have leveled off over time – which unfortunately was not the case with Elena. On the contrary: new symptoms and a “completely new clinical picture” have emerged.

Everything worse than before

Initially, there were functional losses in Elena’s left arm. Sometimes he was paralyzed for minutes, sometimes for hours. At some point the right arm was also affected. “The clinic assured us that such functional neurological disorders are common in pain patients,” says Recttenwald.

But that is not enough. This was followed by seizures, whole body paralysis and loss of speech. “We are forced to cancel the trip for the time being in order to provide Elena with the necessary treatment for the newly developed disease in Germany,” it said in early January.

Elena’s friends are disappointed: “The dream was to leave Elena’s wheelchair in the US and make the return journey on both legs. Instead, we unfortunately bring home both the wheelchair and an increased level of pain and a new condition.”

The return journey is difficult

But the return journey is also difficult. Because of the seizures, Elena cannot fly without medical assistance.

Your international insurance also does not cover costs for return transport. “We are now trying to get the airline to offer medical flight attendants,” Recttenwald explains. If that doesn’t work, Elena will probably have to travel back by cruise ship in early March. (Mrs)

Source: Blick