Italian Endometriosis Association

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Deborah Bush: “I’m Deborah Bush from the New Zealand Endometriosis Foundation, and I’d really like to warmly welcome this morning at the Congress of Endometriosis, Jacqueline Veit who has begun the Italian Endometriosis Association. I think it’s really exciting and innovative what they’re doing in Italy and a warm welcome to all other support groups from around the world. Jacqueline, let’s hear how you began and what you’ve got to say to the world about what’s happening in Italy.”

Jacqueline Veit: “Thank you very much, Deborah. We founded the Italian Association in August of last year. Why was it founded – basically, what happened was this, I am not Italian but I’ve been living in Italy for twenty years now and for the last few years with the advent of the Internet I’ve searched online, I’ve joined groups, visited websites, and I felt that there was absolutely nothing in the Italian language available for the Italian women. So I decided to set up a website, and from this website I started receiving phone calls and e-mails from many, many women asking for help. Women that thought they were alone and were very, very pleased and relieved to find that there are other women that have the same emotions and are going through the same experiences. From there, we started organizing the first support group meeting in Milan. We set that up and the first meeting was in May of 1999. For anybody who hasn’t been to Italy, Milan is in the north and women traveled from as far as Sicily and all over Italy to come to this meeting. This very a successful meeting. After that, the next step was the actual formation of the Italian Association, and it was created in August. In August we had three members, and the official launch was at the Congress on Endometriosis in Santa Margarita in October of last year. Since October of last year, from three members we are now approximately two hundred members, which proves that Italian women need exactly the same as women all over the world. We have the same doubts. We’re sending out about forty of what we call our first kits, which contains informative material of the Association and informative material on endometriosis, and any woman that contacts us receives this material. We have created a list of members that wish to get in contact with each other and we now have a group in Florence, and they had their second meeting in early July.”

Deborah Bush: “You’re doing absolutely fantastic in such a short time. One of the things that confronts us all and is a major problem is this lack of funding, and how do we sponsor and support ourselves? If it wasn’t without the ability of each one of us to not only cope with this dreadful enigma - this endometriosis, but also to cope with our personal life, families, coping with life, and basically, we’re volunteering with this sickness that’s up and running. Have you had any one come to look at sponsoring you? You know, really getting this funding going to help you with all this magnificent work.”

Jacqueline Veit: “Basically we’re not. The truth is we started by paying, we used a loan, a few photocopies coming down at the work place. Let’s be honest now, we are just using what members pay to join which is a very low amount because we have members who pay a certain amount per year and receive form letters. Then we have what we call supporters who can support us, the idea is that anyone can help defray the costs. But quite honestly, we are just about managing to cover the paper. The computers are our own and all the electricity, but our paper and stamps - we’re managing to cover these kinds of costs.”

Deborah Bush: “So if women in Sicily are listening to this interview, and I’m sure so many are because the website has now opened the world for all of us, hasn’t it? But for women who are listening, how can they help you? Or others with the disease, what sort of things can they provide? Are we talking about staff support, about envelopes, are we talking about monetary donations, and also what is your membership? Let’s elaborate on that a little bit.”

Jacqueline Veit: “I’ll answer what is the membership, but do you mean…”

Deborah Bush: “What’s the cost?”

Jacqueline Veit: “Yes, to become a member of the Italian Association, it costs 50,000 lira per year. To be a supporter, it costs 100,000 lira per year, and a supporter will also receive the newsletter. Of course, donations can be anything - everything helps. Mainly what women with endometriosis can do is get together with us to fight this disease, join, and better still help. We need help, we need volunteers, it doesn’t matter what you do. You can stuff envelopes, answer the phone, or write articles for the newsletter. Write your own story, it doesn’t have to be something scientific necessarily but every little bit helps. We really do need volunteers because we’re growing fast, and three women can not manage to give what we want to give to the other women like us.”

Deborah Bush: “Magnificent answers, this is the same story around the world with all the support groups and patient groups, and I think without the knowledge and occupations we wouldn’t, in fact, be here today. We wouldn’t have received attention and I think patient groups have done an enormous amount in pushing change and pushing looking at how we can develop frequent pathways of options through the patient’s perspective. Without us lobbying for that, many changes wouldn’t come about. Isn’t it wonderful we now have another club to join the motherhood, the sisterhood of girls and women who suffer from this disease. It’s fun to have you with us.”

Jacqueline Veit: “Thank you very much.”