Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”

SOURCE TRANSLATED WITH GOOGLE: Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”

Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”

Creating scientific and social knowledge dell’idrosadenite suppurativa (HS, hidradenitis suppurativa). Build piece by piece with the research of scientific literature on a disease for many unknown ways. Only the start of a European research will give the turn on the HS. And ‘This is the dream of Josephine Pintori, Nuoro, president of Inverse Onlus, the first Italian association for patients with hidradenitis suppurativa, born on November 17, 2010. “There are thousands of people in Italy suffer from this insidious disease and difficult to diagnose. And the thing does not change in other parts of the world. A disease that is often kept hidden, like a stigma to be ashamed of, that many doctors do not yet know and can not identify, “says Giusi Pintori.

SOURCE TRANSLATED WITH GOOGLE:
Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”

Author:: Francesca Cardia
Graphic design: M @ f Inverse onlus

Sardinia Medicine is a registered header. No permission Court of Cagliari.
20/12 of 04/09/2012 – sardegnamedicinanew@gmail.com

FULL SOURCE: Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”


Spot hidradenitis suppurativa Reverse onlus

 


 

The hidradenitis suppurativa (HS, hidradenitis suppurativa), also known as reverse acne or Verneuil’s disease, is a chronic inflammatory skin disease characterized by the appearance of subcutaneous nodules (cysts), single or multiple abscesses, recurrent and relapsing, and fistulas. Still today is strongly underdiagnosed and poorly known, although the international literature speaks of a prevalence of 1 per cent of the population. But this is a painful disease for patients and orphan diagnostics and therapies. For this Giusi, with its barbaric temper, he has been working for years to create a European network that can build a better future for patients living with hidradenitis suppurativa.

“Now on the agenda as a reverse non-profit organization we have two major commitments: first of all, on 6 and 7 May in Milan there will be the start-up for European cooperation. The meeting is titled  “Patient Associations for HS: The State of the Art. How to Strengthen cooperation at the European and international level” . “It ‘a great achievement because it will meet the associations from eight different countries, Italy, Spain, France, Germany, Holland, Belgium, Scotland, Denmark. We meet in person in an official capacity even though we had other opportunities. Usually given the distances we dialogue on the Internet, through e-mails or messages and conferencecall. We realized that we have to enter Europe to take us research funds. To start the studies serve three countries. We for now we are eight, but the goal is to extend the network. Studying the disease, talking to patients around the world, I saw that knowledge is the same everywhere, ie few.Italy, with our association, is the one that is marching in this direction and is driving other countries. The effort is huge, but I told myself that if we can carry on the scientific studies we can not keep them hidden. I work always for the community: there is any outcome must be made ​​aware of all, because the hidradenitis knows no geographical boundaries. ” The Italian association is throwing down design ideas to be able to start scientific research, would be the first start on the disease, reiterates President of Reverse Onlus. “We want to understand why there is this disease, what are the triggers, what can help patients.And ‘fundamental therefore in this way to move all together. International cooperation is essential, alone it is not going anywhere. ”

But you have to work a lot in Italy. “With us, the disease is strongly underestimated,” explains Giusi Pintori, “things have improved, but there is still much to do. On this front, we organized the World Day HS to be held June 7 at the Ministry of Health in Rome. An Italian event with an international feel, with some doctors who come from abroad. Among them, we are particularly pleased to host the dermatologist “Sardinian-Italian-German” Maurizio Podda.

PDF DOWNLOAD

We chose strong doctors on the number of patients seen, because the medicine is made of medical-political and medical-operational. Us to understand what it is and how the hidradenitis suppurativa we need medical-operational. We want professionals who see patients and follow them every day, because in this disease, yet to be revealed, it is the doctor who learns from the patient “. There will also be testimonies of patients. “They will tell the everyday stories that leave you speechless, for the burden of pain, suffering, fear. The patient hs tends to be ashamed, hiding. In this sense, the sharing of experience is very important. ”

On the level of care something moves. The European Committee for Medicinal Products for Human Use (CHMP,  the European Committee for Medicinal Products for Human Use ) of the European Medicines Agency (EMA) issued a positive opinion for adalimumab of Abbvie, (brand name Humira) and Italian patients are awaiting the ‘approval, it would be the first and only drug approved for hidradenitis. “The treatments they undergo the patients are the most diverse, most inappropriate. It ‘should also be noted that the majority of sufferers is constantly exposed to surgical drains horror movie without anesthesia, and following the failure diagnosis that makes them much worse often undergo surgery demolition in intimate areas. This is why the intervention of the research to be applied then to clinical practice is essential. ”

idrosadenitesuppurativa



SOURCE TRANSLATED WITH GOOGLE:
Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”

Author:: Francesca Cardia
Graphic design: M @ f Inverse onlus

Sardinia Medicine is a registered header. No permission Court of Cagliari.
20/12 of 04/09/2012 – sardegnamedicinanew@gmail.com

FULL SOURCE: Hidradenitis suppurativa, Reverse Onlus: “United Associations for European research”


 

Tags:
0 Comments

Leave a reply

HSAWARENESS.ORG | Fighting for Hidradenitis suppurativa (HS), a.k.a Acne Inversa Patient and Doctor Awareness ©2017 hidradenitissuppurativaawareness.org  All Rights Reserved. Your use of this website constitutes explicit agreement to our Terms of Use and Privacy Policies. This website does not provide medical advice, diagnosis or treatment.

Log in with your credentials

Forgot your details?