Impact she magazine english

SHE Impact

THE MOST SIGNIFICANT CHANGE SHE programme (Strong, HIV positive, Empowered women/ Educational programme) is the first European integrated programme aiming to respond to the needs of women living with HIV and of health professionals involved in their care by providing new scientific resources for clinical and community settings. SHE programme aims to “Support women living with HIV to feel empowered to improve their quality of live including obtaining the most from health services�.

Programme funded by Bristol Myers Squibb

SERES SERES is the first and only organization with and for women living with and affected by HIV in Portugal. Founded in 2005 by a group of people living with and affected by HIV who felt the need to give visibility and voice to women living with HIV. SERES is recognized as a Private Institution of Social Solidarity since 2007 (2/2007).

SERES believes that capacitation and empowerment of women are essential to reduce their vulnerabilities, ensuring their dignity and respect for human rights and sexual health.

page 2 of 22

4 the most significant change

5 sofia

6 helena

8 maria

9 sandra

page 3 of 22

10 alice

12 paula

14 carolina

15 margarida

17 leonor

page 4 of 22

THE IMPACT OF SHE PROGRAMME IN MY LIFE

THE MOST SIGNIFICANT CHANGE The most significant change technique is a participatory form of monitoring and evaluation without indicators; an approach by stories that measures the impact of the project and assess and analyse the systematic significant changes generated by the project: - Participated because donors are involved in the analysis of the stories.

- A form of monitoring because it provides useful information to manage the program.

- And contributes to evaluation as it provides data regarding to impact and results that can be used to improve the program as a whole.

page 4 of 22

S O F I A (portim達o)

We learn a lot, it join us and we leave this training very empowered and optimistic.

Unity is strength!

I learned that I am not alone in this fight I became involved in SHE programme to be able to help everyone with the same problem, meet people in the same situation, to disclose/confide and learn ...

The most important moment for me was when I learned that all the women who were present were HIV positive and that we had much in common beyond the disease. But also the same problem of not being able to confide to others, because deep down this is a silent disease and that obliges us to have this attitude - unfortunately people do not see this disease as cancer or another disease.

People are not very supportive and unfortunately there are still a lot of prejudice and discrimination...

I did not think the training was difficult at all, and if I would repeat it I would like to do the same thing, because I learned that I am not alone in this struggle. That unity is strength.

This course made me want to participate and be able to help other women. In this training I learned many interesting things in all aspects. And I recommend to other women to participate in this training because it is something very constructive for us to live well with what we have, to have a good quality of life and take full advantage of the health care services we use. We learn a lot, it joins us and we leave this training very empowered and optimistic.

In conclusion we must Live, have faith, and above all be happy and put in our head that is not HIV that will impede us to be happy and live our lives ...

page 5 of 22

H E L E N A (lisboa)

I recommend participating in projects, groups, everything which can help overcome the obstacles that often appear with the disease

I grew a lot at personal and emotional level If six years ago someone told that one day I would have HIV, surely I would not believe.

Unfortunately we always think we are immune just for not being part of the so-called risk groups.

I had a relationship for over ten years. We were apart for a while. I suppose it was then that my expartner contracted the virus. I knew when he fell ill. The world fell on my head. But thanks to great support I could overcome obstacles. And I now realize that I have become a better person after HIV. I joined this program because I wanted to primarily help people with the same pathology. And what moved me most were the testimonies of some members of the group. A moment that was in my memory was the dance and twirl as Popota. It was fun and exciting at the same time.

The course was not difficult. The only thing that I would change is the total time of the course, it was a lot of information and sharing for a short time.

This course made me want to participate in other projects, aiming to help and grow with others. I grew up a lot at personal and emotional level and mainly I acquired security at emotional level. I believe that when you are emotionally well everything seems to contribute to our progress at all levels. And I wish to continue my way to work among peers. Another interesting aspect was to meet people who were isolated and now fighting for their rights; feel that the

page 6 of 22

people involved are getting better every day. And I would like also to convey love, optimism, confidence, security, will to win, everything we need to be happier.

I learned many important things, mainly that the best weapon we have is often the information. I recommend the participation in projects, groups, everything which can help overcome the obstacles that often appear with the disease.

page 7 of 22

M A R I A (portim達o)

We stop having so many fears. We realize that life is not over, and perhaps it is going to be a better life and we become a better person

I started to have more friends and to have more support When I found out that I was infected, I thought my life was over, but after all it had a much stronger start, I awake to life !!!

I entered the course to identify with someone in the same condition and the best that happened to me was to realize that the colleagues were after all my friends.

The hardest part was to speak in public and would like to further understand everything better.

This course makes all the difference because I have more information, a life with more prospects; I started to have more friends and to have more support.

I recommend this course because we start to have a better understanding of all, we stop having so many fears. We realize that life is not over, and perhaps it is going to be a better life and we become a better person.

page 8 of 22

S A N D R A (coimbra)

I understand myself better and accept me as I am

Accepting is the key of this whole process At the time of diagnosis discovery, the world collapsed completely. I felt the end of the world very close. But with others like me, and others different than me I could look at my life again as a gift from heaven. I had another opportunity to do things on another perspective with much, much love to give, eventually to get it back (the law of attraction).

The course attracted my curiosity, I wanted to know more. I signed up.

The moment that struck me during the course was when the trainer put a ball of wool in our hands in order to know each other a little more.

In this course, nothing has been difficult as we shared among peers. But would like to have a general knowledge of all involvement.

This course was and is important as I know better my health problem. Since my involvement with SHE, that I have come to see and look the whole dynamic in another perspective. And undoubtedly had an important personal impact, as I understand myself better and accept me as I am.

I realized with the course that we are not different but special. And acceptance is the key to this whole process. Love myself so then can be possible to give a hand to others.

page 9 of 22

A L I C E (PortimĂŁo)

this training changed without any doubt our position before doctors and other health professionals, giving us a voice and face and the possibility of working more closely with the hospital and its resources. There is now, without a doubt, more sharing between the two parties and more teamwork

It is in the family that we should find love, warmth, respect and support and that's what SHE gave us I knew I had HIV when I was trying to get pregnant. I was infected through a short and difficult relationship with a drug user, a few years before. During this relationship I have done HIV tests, which resulted negative. So when I finished the relationship I didn't think it was necessary to repeat the testing. My current husband has been my biggest supporter! And thanks to a miracle I didn’t infected him, whilst I was not aware of my status. Now I'm doing the treatment for hepatitis C, and despite suffering some side effects, my goal is to heal and have one less "bad disease". In all of this, I consider myself a person blessed with luck. And much of this positivity, I owe it to SHE/SERES. Thank You!!

The reasons that led me to participate in this project were, in particular, the desire to share experiences, difficulties and possible solutions; all the information that has been passed, was and will always be an asset for us and for all those around us - "the more informed we are, the stronger we will be." I love to help and make people more happy and positive.

The most magical moments, of training course, were those of sharing! And observe the group along the training sessions, increasingly more relaxed and United. The most memorable moment

page 10 of 22

happened during the graduation of training. And see through the postures and sharing, how much we had change in relation to our first day.

With this course my self-esteem greatly increased! And above all I found in my “girls of SHE ", a new family. An harbor always safe. My level of information on the disease and all that involves increased greatly. What is quite important because it is in the family that we should find love, warmth, respect and support (among other things) and that's what SHE/SERES gave us. And I feel something very good started with this project, which is in its beginning, and starting to become stronger and visible.

At social level SHE training changed without any doubt our position before doctors and other health professionals, giving us a voice and face and the possibility of working more closely with the hospital and its resources. There is now, without a doubt, more sharing between the two parties and more teamwork. This is to me very important, as it is with the medical professionals that we clarify our doubts on our pathologies.

With this training I learned that one of the strongest weapons that one can give us is undoubtedly a reliable information, where we can held to and transmit to the next, and end with the misconceptions and taboos around the disease.

I'd like to first say a very special thank you to our trainer and friend, Joana, and to the wonderful team of Seres! Thanks for your positive energy and light, which returned to my life! Thank you for being participating in this project and support other HIV-positive women to find one self again. I am very grateful to this project!

page 11 of 22

P A U L A (coimbra)

I learned not to be afraid of being discriminated, to value myself more as a person and believe in my abilities.

to compromise with time and life When I got to know about my infection (in February 1996), I felt that my sins were paid. Then I was afraid of death and become revolted because I had had a daughter (in January 1995). I thought it was unfair, I was 26 and she was one year old. How could I take care of her now that I had my days numbered? Then I looked to other infected people who were not afraid and absorbed life.

Now I take one day at a time, I do not have high expectations for the future however and more than ever I enjoy every minute I live, thanking for the opportunity rather than moan about what could have been if I didn’t become infected with HIV. I enrolled in SHE programme to emerge from anonymity and to be useful for other women recently infected or if no longer naïve would like to find identification with other peer. After 19 years of infection, I think the solution is that we can talk openly with each other and in society.

The most touching moment in this training was to hear the story in the first person and the difficulties experienced by another colleague whose HIV infection was not related to drugs or with risk behaviours, but by blood transfusion. And yet she had felt all possible and imaginable discrimination by society, particularly in the Maternity, where she was in treatments to get pregnant and with regular admissions. It was in the maternity that she found discrimination. And she began to fear that other people knew about her HIV status.

page 12 of 22

The most difficult in this training was to ensure the return transportation. If I had a car it would be much better.

On a personal level I was touched by the incredible life experience of the trainer who instilled me that we must commit ourselves to life even though nothing is guaranteed, unless the Here and Now. So I decided to have a dog and after a year and three months I do not regret this commitment. Take the responsibility of having an animal is committing to life and with time. Things that I thought were taken away by AIDS. With this learning I regain hope to perhaps live at least another ten years and still have time to be able to commit to things I considered away since the day I knew I had HIV-1 (February 1996). In this sense it was of great importance.

With this course I learned to not to be afraid of being discriminated, I value myself more as a person and I believe in my abilities. Being out of anonymity is also prevention. We should in the first person, give our face to the younger and not be afraid.

In the first years of my infection, I did not hide my HIV status, to shock people but from that I started to want to be an example in order to show that prevention is the only way because there is no possible cure – there is no return after transmission. We will have to live with it till death. And being infected is much more than taking pills and doing blood tests. I would love to be able to talk openly with other HIV-positive women with more time of infection than me, to know their feelings and to identify myself in the shared whirlwind of emotions.

page 13 of 22

C A R O L I N A (Sintra)

This course is the best help to deal with the virus, to learn to fight, to go to "war" and know how to win this battle, and that's important because I will win this 'war' for many years

United we will overcome Once upon a time, when I had sex without a condom. And ... I am HIV positive, but I'm happy with life.

This course interested me because I wanted to learn more about the human immunodeficiency virus and to help myself.

Memorable moments? All, because I was with my people, my friends and colleagues.

The saddest was the last day, I wanted more :-( The course was not difficult because as I said earlier I was surrounded of my people, of my friends who understood me.

This course is a better help to deal with the virus, to learn to fight, to go to "war" and know how to win this battle, and that's important because I will win this "war" for many years.

It also allowed speaking better about the situation with people that sometimes talk about what they do not know. I feel that I now know better how to deal with myself, because I know that I will live to be 100 years â˜ş I also learned that I am not alone. And I recommend this course! Do not be afraid to be part of a group like our SHE, we are one family. As a good friend says ... A match alone is easy to break, but more than ten can no longer break. By this I mean that together we will win this "war" much more easily.

page 14 of 22

M A R G A R I D A (FundĂŁo)

I recommend SHE programme, as this course is an opportunity for growth at all levels. Together we achieve what we alone are not able

I started to have a group of women with whom I identify I grew up healthy and with a good educational, sports, musical and social background but when I was 17 years old I entered into the world of drugs. At the age of 20 I contracted hepatitis C and with 28 years old I contracted HIV. With drugs use I quickly found myself in the barrier between HIV and AIDS and in need of treatment for hepatitis C. But nothing could be done because I could not stop using drugs.

With 30 years old I decided to recover from the diseases, from my life path, which was not easy but it is possible. The first step was the longest and I still went back but I quickly realized that I would die if I did not recover. I had to fight and embrace life with all my strength. I went back to take the first step firmly. Today, with almost 34 years old I have undetectable viral load, I'm doing the treatment of hepatitis C that already became negative and I don’t use drugs for 2 and half years. I have a life!

I started this course because I wanted to know more about my illness, talk and listen, clarify my doubts and meet other women with the same problem.

page 15 of 22

The most memorable of this course is that we arrived alone to SHE and today we are together. I saw the growing of knowledge, empathy, mutual help and self-esteem in each of us. The change in the younger woman is the moment that I have in in memory. She was newly diagnosed and late in pregnancy, she was scared, confused, sad and fragile when she arrived to SHE and at the end of the course she was cheerful, communicative and strong to have her baby that was born healthy and whose delivery went well. Her eyes went from empty to bright and alive, at beginning she did not talk and just cried and eventually put us all laughing and with good mood. That transformation that I had the pleasure to witness!

I did not find anything difficult in this course and would not do anything differently next time.

The most important for me was starting to have a group of women with whom I identify. Before the course I felt alone in the fight against HIV, especially as a woman. I tried to speak of the disease in other contexts outside SHE but here I felt that regardless of age, transmission mode, personality, profession or other factors, the disease united us. The identification with other is much stronger than scientific knowledge or open mind to accept or understand.

On the other hand in the workplace I no longer have problems to attend my consultations and the in the hospital I do not cease to clarify my doubts and I even take a notebook to keep a record from consultation to consultation. In society I realized that I only disclose if I want and who I want. I know that if I fulfil my duties I can fully live my rights. And I still have a group to talk that understands me so well.

With this training I have consolidated what I knew, I learned a lot and had different themes because we had different modules and no longer felt alone. I recommend SHE programme as this course is an opportunity for growth at all levels. Together we achieve what we alone are not able.

page 16 of 22

L E O N O R (Coimbra)

I recommend your participation because here we can talk, ask questions. Here we are not a strange being, we are human beings and we can talk without anyone pointing us the finger.

I learned to defend myself I found out that I was infected with HIV since 2005. I was infected by my husband. I always wondered to myself, why me? ... as I only met one partner and after all one is enough...

At the time I found out my infection I was already weakened at CD4 and viral load level and started doing anti-HIV drugs. This in turn has had some side effects but nothing special. I feel good, I just have a great revolt within me, because I am not allowed to be a mother like all other women just simply because I cannot get pregnant naturally ... It is a great injustice.

I enrolled in the course because the doctor indicated me and I thought it was a plus for me as a person and also for my future.

During this course I was touched to know that there are still people who do not know that they may become pregnant like anyone else whether or not living with HIV. And wouldn’t do anything differently.

I learned that I have just to report about HIV in case of being medicated, before I always made a point of saying in order to protect others, so I always said in reception and was always looked. And if for some reason I didn’t tell I felt it as a huge mistake and felt guilty. This is not the case anymore.

What is important is that here we can talk about HIV without anyone pointing fingers, as we are equal.

I learned to defend myself. I recommend your participation because here we can talk, ask questions. Here we are not a strange being, we are human beings and we can talk without anyone pointing us the finger. I recommend participating because here we can talk, talk, ask questions. Here we are not animals, we are human beings and we can talk without anyone in point the finger.

page 15 of 22

S E R E S the first and unique organization in Portugal with and for women living with and affected by HIV. Since about a decade (since 2005), that SERES has been leading the HIV response, in the perspective of women in Portugal, in order to promote their rights and visibility. SERES has empowered women living with HIV, at national level, giving the tools, strengthen women to intervene in their community namely by the replication of SHE program, the creation of support groups, in providing individualized support in hospital.

In return the women involved in SHE program demonstrate their commitment, strength and courage in the intervention within their communities. We get support from their energy and solidarity to give voice, to break the silence, to halt the self-stigma and the barriers that prevent women living with HIV to have fulfilled lives.

Seres response aims to promote projects for a more integrated life with HIV and for the quality of life of women living with and affected by HIV. Seres believes that empowerment of women is essential to reduce their vulnerabilities, ensuring dignity and respect for human rights and sexual health.

Since 2005 that we develop projects aiming women living with HIV’ visibility and capacitation and in 2013, through SHE program 28 women with HIV were trained, 4 self-help groups were created, 12 women provide individual peer support (in-hospital).

This programme held in articulation with a team of doctors and nurse committed and motivated, is funded by Bristol Myers Squibb.

For ALL our THANK YOU for your interest and support!

Isabel Nunes Founder President of Seres December, 2014

S E R E S - united for a just, equitable life and with quality where women living with HIV have resources, voice, choices and opportunities page 16 of 22

CONTACTS Find more about our activities in our website: www.seres.org.pt facebook: www.facebook.com/seres.vih email: isabel@seres.org.pt

PEER HELPLINES CASCAIS/SINTRA: 965 029 523 (10:00-12:00 from Monday to Friday) PORTIMAO: 965 029 655 PORTO: 965 029 343 (9:00-17:00h from Monday to Friday) page 17 of 22

Programme funded by Bristol Myers Squibb