J15 centimeter heels, miniskirt, and impeccable blonde bob: in the photo taken at a commercial event in Paris, Gaëlle Daburon is in working-girl mode. She beams. “It was my life before,” slips the Bordelaise with a sad smile. Before the illness. Before this evening in August 2022, where at a party with friends, she falls. Crack. The right knee ligaments cannot resist. The affair should have ended with an operation, a few rehabilitation sessions and a return to the dance floor.
Except that’s not at all what happened. The knee swelled, reddened, became deformed, stuck. An unbearable pain, not being able to bear the contact of clothing on the skin, losing sleep, smiles, the joy of living. During “crises”, Gaëlle is “like electrocuted”.
It was his physiotherapist who first mentioned the word: algodystrophy. A rare disease (1% of French patients) which is triggered by trauma (fall, operation) and manifests itself by neuropathic pain and disabling inflammation. Bone scan confirms the diagnosis.
“I’m 40 years old, it’s important for me to say that,” explains Gaëlle Daburon.
Laurent Theillet / SO
In this tunnel of suffering, there is hope: “Algodystrophy is supposed to last two years. » So Gaëlle takes “her patience” and swallows the horse analgesic treatments prescribed by the pain center. But the fiercest molecules have no effect. “In France, there is no treatment to treat algoneurodystrophy, or even relieve the patient,” she says, shrugging her shoulders.
“I’m no longer useful”
When in doubt, she tries everything: opioids, morphine, heavy treatments, alternative, alternative medicines… Nothing works. “The doctors consider that I have developed a serious form with multiple complications, particularly in the nervous system. » Among these complications, severe osteoporosis, osteoarthritis, and pain that spreads to the back and collarbone. At the end of her strength, Gaëlle is placed on total disability, and on “long-term illness”. “I’m no longer useful,” she concludes. Under house arrest, “like a goldfish in its bowl”, she has the impression of being “locked in a bubble of pain”.
The disabled parking card was refused on the pretext that “she still has a left leg”
His only help: social networks. On a forum dedicated to algodystrophy, she sympathizes with Betty and her deformed foot, Zoé, 14 years old, and her amputated leg… In this group, patients discuss the disease, their treatments, the side effects. But above all, she finds the support on the web that she feels she did not obtain in a doctor’s office. Like this Sunday evening, where she sent an SOS email to her doctor, invoking amputation and suicide… She claims to have only received a terse response.
“I’m serious,” insists Gaëlle, “I can’t live like this anymore. I am no longer the same woman. I gained 20 kilos, I no longer know why I get up in the morning. But anyway, I’m only 40 years old,” she insists.
“Make this disease known”
To hold his partner at arm’s length on the edge of this precipice, Laurent Fernandez took a sabbatical year. The entire life of the family is now suspended by algodystrophy. Gaëlle can only move around in a wheelchair outside, while at home, she is glued to her crutches.
The height? “I was refused a disabled parking card on the pretext that I still have a left leg,” she says. But this gives her the strength to fight against the unfair lack of consideration for people with disabilities, the lack of empathy and humanity on a daily basis, she says.
The Bordelaise puts this energy to good use on social networks, on TikTok and Insta, where she fights to raise awareness of “this little-known disease, not at all explored by research”. She even whispered the message into the ear of her idol Pascal Obispo during a dedication in Bordeaux.
Jean Maurice Each / SO
Gaëlle Daburon: on the occasion of a dedication in Bordeaux, Gaëlle Daburon, in a wheelchair, made her idol Pascal Obispo aware of algodystrophy, the disease from which she suffers.
And then, there was a new light that was lit in this morbid tunnel: “Near Texas, an innovative treatment promises to cure 94% of algodystrophy patients, in twelve weeks of treatment, at the Spero Clinic” , she said. His network friend, Marjorie, is undergoing American treatment. Arrived in a wheelchair, today she walks. The problem? The treatment costs 80,000 euros…
Gaëlle has no choice, she swallowed all modesty and opened an online kitty. “I no longer have a choice. Our family life is at a standstill, I need help, this is my only chance,” she says. “Help me not to suffer anymore. I need you. »
(1) On Go Fund Me, Help me to heal, Gaëlle Daburon. On TikTok: algodystrophy and me
