Cases of Ehlers-Danlos Sydrome increases in Switzerland

Cases of Ehlers-Danlos syndrome continue to increase according to the Swiss network which deals with this silent disease, but which poisons existence.

Ehlers-Danlos (SED) syndrome is one of those invisible diseases that can rot the lives of many people, most often women. Similarly, They represent 98% of cases seen in consultation, according to the Vaudois University Hospital Center (CHUV).

Rosanne, a 34-year-old Bex resident, has this disease and defines herself as “patient-specialist”. However,

Bellerine sheds light on the difficulties encountered on a daily basis:

The disease is defined as a rare abnormality of the connective tissue of hereditary origin characterized by hyperextensibility of the skin. Nevertheless, cases ehlers-danlos sydrome increases switzerland large atrophic scars and generalized articular hypermobility. However, There are 13 distinct forms of the SED, exposes us specialists contacted. For example,

Concretely, the SED is said to be multi-system. In addition to chronic pain, many disorders (digestive, epidermis and even caudovascular) strike patients. Consequently,

For Rosanne. Similarly, the unpredictability of the disease is also an aggravating factor:

Physio. Additionally, Similarly, taping – Cases ehlers-danlos sydrome increases switzerland

Apart from the multiple physio sessions, to remedy it, specialists most often affix taps (therapeutic adhesive bandage) to stabilize joints and cases ehlers-danlos sydrome increases switzerland thus relieve pain. Nevertheless, For the most unlucky, the taping does not work. This is the case of Rosanne: “I am allergic to the glue of the dressings. Instead, I have compressive clothes. I wear them 1-2 hours a day or when I have big pain. ”

The disease continues individuals to daily pain which are sometimes unbearable. A torture, between round trip to the doctor and existence placed in parentheses. Many must stop their professional activity, crushed by evils and this chronic exhaustion. Rosanne explains that she can no longer work by dint of large tremors. even an impossibility of walking and forcing her to equip himself with crutches. “And 2 hours later, I can move normally,” she cuts.

Cases in augmentation? – Cases ehlers-danlos sydrome increases switzerland

To take stock of this cases ehlers-danlos sydrome increases switzerland invisible disease. we made a phone call to the Ehlers-Danlos Netz Schweiz association and its specialists, as well as the Aylin Canbek DRE, clinic at the rheumatology clinic of the Zurich University Hospital and head of the medical board. A network that is actively committed to better recognition of syndrome with health and public professionals.

During our exchanges, the first question was the curve that syndrome took in recent years. Contacted specialists find “an increase in suspected cases”.

An increase also verified by the Swiss network:

Although the curve climbs. it is to be analyzed from different angles: “This progression seems to be more reflected a better recognition of the pathology”, informs the Swiss network.

The figures show that the prevalence is estimated at around 1 case for 5000 people. However. specialists are clear in this respect: “This figure, although classifying the SED among rare diseases, makes it a more frequent condition than one imagines.”

The diagnostic like a rocking point – Cases ehlers-danlos sydrome increases switzerland

The real problem lies in the difficulty for people with syndrome to obtain rapid diagnosis. It is in these terms that the network explains:

An obstacle called the «medical gaslighting»

The fateful passage of the diagnosis is strewn with pitfalls for cases ehlers-danlos sydrome increases switzerland both parties. This is where intervenes le «medical gaslighting». This term is known in the medical environment when the healthcare professional minimizes. denies or devalues the symptoms of the patient or the patient.

“It is in your head” is a refrain that people affected by this disease can hear in the mouth of a loved one. or even a treating doctor who minimizes complaints from the patient.

“No one listened to me at first,” says Rosanne. The young woman says she had first symptoms at the age of 8, victim of chronic tendonitis. She adds: “At 13, I had to be bedridden for seven weeks because I could no longer walk. But they all told me that it was in cases ehlers-danlos sydrome increases switzerland my head. that I was crazy and that my mother was overprotective. ”

Fourteen for a diagnosis

Rosanne waited almost fourteen years for a final diagnosis to be madein August 2023 to be precise. A figure which. according to the Swiss network, is in the average, according to the latest studies, which evoke an average period of four years for men and sixteen for women. It was herself who had to force fate. by making a request to the rare disease sector at the CHUV, by “highlighting in my file the list of my symptoms”, she says. It was then that things moved.

Detecting a rare disease is a real headache for specialists. In the meantime, for patients, the expectation generates undeniable psychological consequences. The clinicians’ challenge to establish cases ehlers-danlos sydrome increases switzerland a diagnosis can send a patient or a patient in a form of rejection.

Research Google increase

Nowadays. if all indicates that the disease is progressing, awareness of the disease is a factor to take into account. The considerable increase in Google research in Switzerland is proof of this. The Swiss SED network is categorical. supporting evidence:

This information presents flaws and lack of information concerning rare diseases, according to the Swiss network, signaling persistent dysfunctions of the Swiss health system.

But today. it is above all a question of reducing the deadlines between the appearance of cases ehlers-danlos sydrome increases switzerland symptoms, the diagnosis and the implementation of adequate treatment, affirms the association. “The road remains long towards recognition of the particularities of the SED. the specific needs of the people who are affected,” she continues.

The cross. banner to obtain An AI annuity

For Rosanne, as she entrusts to us, it is a real way of the cross. Worse, different diseases (Arnold nerve syndrome, chronic migraines and endometriosis, among others) were triggered by the SED. “They have just diagnosed me with a TSA (Red: an autism spectrum disorder),” she blows us.

For the Vaudoise. after the long wait for her diagnosis, her patience is again put to the test to obtain an AI annuity. Requests “often end with negative responses”, sighs Bellerine. “But my doctors hope that my cases ehlers-danlos sydrome increases switzerland other diseases that are directly linked to the SED can promote my request. ” she continues.

And to conclude, filled with humility: “It is a very complex disease for the medical profession as for patients”. In view of our long. multiple discussions with specialists, who most often prefer to pronounce anonymously, Ehlers-Danlos syndrome is a doubt a disease that will require many years to be understood by the eggs of medicine.