The Enigmatic Patient Causes, Symptoms & Treatments | Skin Matter
Painful knots in the genital area torment a woman for decades. Again and again she is operated on, the correct diagnosis is missing. Until she encounters a disease on the internet that matches her symptoms.
Fear of the outside world
Whenever she can not stand it any longer, the patient goes to a doctor known to her or to a new doctor. Abscess, ingrown hair, inflammation of the hair follicles are the various diagnoses. The doctors try it with the scalpel, with ointments and medicines – nothing helps permanently.
But with each cut, scars form and their skin becomes increasingly disfigured. The pain limits the patient in her everyday life: she can no longer ride a bicycle and avoids long walks. She does not go to the swimming pool or the beach any more.
Because the symptoms are so severe, the doctors recommend her a so-called cleansing of the skin. The skin is removed down to the fatty tissue. “From there it grows again, but without sebaceous glands,” explains dermatologist Natalia Kirsten from the University Medical Center Hamburg-Eppendorf, who reports on the patient in the “Hamburger Ärzteblatt” . The big wound takes six months to heal – six months the woman spends mainly in bed.
“I stopped hugging people”
Then comes the devastating realization: the restored skin is healthy, but next to the operation area and underarm area new abscesses arise. “The inflammatory pressure in the depth remains and makes its way elsewhere,” says Kirsten.
In addition, there is another problem: The inflamed nodes sometimes burst on their own and exude an unpleasant odor. “I stopped for fear of hugging people,” said the patient in conversation with her doctors. Her husband also tells of his wife’s great discomfort at leaving the house at all.
Curious disease stories
After years of complaints, the woman encounters an illness on the Internet that resembles her symptoms: Acne inversa is the name given to the skin condition that causes the sebaceous glands and hair follicles to become inflamed. This results in recurrent abscesses in the genital area, it may also affect the groin or the armpits. Unlike other encapsulated inflammations, however, no bacteria such as staphylococci or streptococci play a role in acne inversa . The abscesses of those affected are germ-free, presumably it is an autoimmune process – the body’s own defense attacks the tissue.
A diagnosis – but no therapy
The patient turns to dermatologists in a hospital in the Lower Saxon town of Buxtehude near Hamburg. She tells the doctors there of her suspicions. After some research, the diagnosis is clear: The woman actually suffers from acne inversa.
An effective therapy, however, is not established at this time, various antibiotics do not help the woman permanently. Years go by, in which the inflammations now also drill small roads in the anal area into the skin, so-called fistulas.
In 2014 there is finally a new therapy: An antibody called adalimumab, which has been used for several years in rheumatoid arthritis . Once a week, the woman gets the antibodies now injected as immunotherapy. After a short time, the success sets in: the skin heals, there are no new sources of inflammation. “That has completely changed my life,” says the patient to her doctors.
In 2015, adalimumab is officially recognized as a drug for acne inversa. However, the therapy, which costs about 40,000 euros per year, does not help everyone: “30 to 40 percent of patients do not respond,” says dermatologist Kirsten. Every three months, the woman comes to her consultation, whenever Kirsten has to prescribe her drug and control her blood levels. The therapy has returned almost 59 years old patient almost all her quality of life after nearly 30 years of suffering.