Endometriosis, a flyer can change lives

There are many volunteers who participate in the activities of A.P.E. Endometriosis Project Association, which has been working for more than 15 years to inform about this chronic and debilitating disease, whose causes are still unknown and for which there are no definitive cures. Awareness that makes you realize how widespread the condition is and how important it is to know about it.

There are in fact about 3 million women in Italy with endometriosis, many of whom are able to get a diagnosis many years after the onset of the disease, which is difficult to recognize (it is estimated that on average the time to get a response to the pain and suffering experienced due to endometriosis is between 7 and 8 years).

Hence the initiatives of A.P.E.

Hence the initiatives of A.P.E. which since 2005, thanks to a group of women with experience of endometriosis which has expanded over the years, carries out widespread information starting in schools and reaching medical clinics and meeting places, to concretely help those living with the pathology and orient them to specialized centers where they can undertake specific treatment paths, which vary depending on the case. Endometriosis is a complex disease that originates from the abnormal presence of the tissue that lines the inner wall of the uterus, called the endometrium, in other organs (e.g., ovaries, tubes, peritoneum, vagina, and sometimes intestines and bladder), and causes severe pain, so much so that it limits daily and work life. Sometimes, even physicians underestimate the various implications.

Jessica Fiorini, now vice president of the Association

Jessica Fiorini, now vice president of the association that has become a point of reference throughout Italy, explains that even a leaflet can make a difference and direct women, who are often bewildered and frightened as they fail to understand the symptoms of endometriosis, toward the road to treatment. “If I, too, when I was a teenager and was so sick, had had the opportunity to receive information about the existence of the disease and its symptoms, maybe some things would have turned out differently,” she says. “When my colleague brought me the association’s flyer, I realized that I did not suffer from a rare disease, that there were many of us, and above all, from there, my commitment to volunteering started.

Distribution of information materials was one of the first things done by the A.P.E. and still do today. I like to believe that finding a flyer in a pharmacy, at the doctor’s, and wherever they are distributed thanks to the volunteers and all the people who help us, can make a difference for someone, as it has for me and for many others.”. Today there is the web and social media to engage women (Facebook A only.P.E. has more than 37 thousand followers), but there are many and varied actions to confront and support each other in the fight against the disease, to obtain rights and recognition from the institutions, to give space to campaigns to raise awareness in counseling centers and at primary care physicians.

In its long history

In its long history A.P.E. printed more than 200,000 informational leaflets, pamphlets with practical and bureaucratic directions, “pass the information” postcards, disseminated information on specialists to turn to and public centers specializing in endometriosis, guides for dealing with diagnostic tests and possible treatments, collaborating with physicians, researchers, experts from all over the peninsula. Among the latest activities is the creation of the Guidelines on Nutrition and Proper Lifestyle for Endometriosis, the result of an articulate interdisciplinary work involving several nutritionists, who, based on scientific evidence and years of experience with patients, have drafted a series of practical suggestions to help women.

The support meetings

The advocacy meetings, the hundreds of conferences and informational appointments held in all regions, the participation in medical conferences, and the national conferences set up since 2010 to share all medical and health updates, were immediately greatly appreciated by the women who are now on the front lines to assert their rights. In particular, they are calling for urgent health measures and adequate responses from the national health care system, which is still relegated to long waiting lists for examinations and surgeries-a problem considering the importance of early diagnosis-and high costs for treatment (due to non-exemption from medications, therapies and other multidisciplinary services not guaranteed by the national health care system).