Behind the scenes of the Initiative Uterine Fibroids

Behind the scenes of the Initiative Uterine Fibroids

Today we would like to introduce You to Raysa, PR student from Brazil and member of the world’s largest student-run organisation AIESEC. An organisation that offers young people the opportunity to be global citizens, to change the world, and to get experience and skills that matter today. We were impressed that Raysa applied in English to our German written internship offer and thought, hey, we need to get to know this woman, invited her….it matched and we gave her something to do immediately! Because on our way there are many things to be done and solved.

 

Raysa, future PR Professional, enjoying a cup of healthy Mate tea, a common refreshment in Brazil.
Raysa, future PR Professional, enjoying a cup of healthy Mate tea, a common refreshment in Brazil.

1. Who are you and what do you do?

My name is Raysa Townsend Carraro, I am 22 years old and my nationality is Brazilian. I was born in Bento Gonçalves, Rio Grande do Sul (South of Brazil),city that is called the wine land because the wine produced in this region is very known and consumed in all country due to its high quality.
Currently I am finishing my studies in Public Relations at Federal University of Rio Grande do Sul – UFRGS and during the last month I had the pleasure to work in Uterus Myomatosus Initiative.

2. What made you apply for our job position online-marketing volunteer for
female healthcare project?

I was always engaged in social projects because they really make difference on peoples lives and I am a person that care about society. I believe that we have to work in favor of helping people that need. Uterus Myomatosus called my attention due to it has summary importance for women who are suffering from uterus fibroids, helping to restore their quality life. Thus, its social aspects motivated me to apply for the internship.

I felt that being part of the Initiative team I could do something relevant for women that are suffering and needing a support. I saw that matter is not addressed by the population with due importance and was my duty as woman do my part to change it. Today it’s this project that I can support, other projects in the future can also be done by me.

3. What strengths of you are most useful for supporting the Initiative?

In this project I used many concepts of Public Relation in order to establish and reach our main target, creating strategies to contact them. The knowledge about business vision, mission and their strategies were very important because our objective was structure an action plan to put the focus of our stakeholders and possible sponsors in the initiative. My passion for social work and good humor helped me to perform with quality always purposing new ideas and projects.
 
The experience I had in looking for new partners and in marketing area helped the initiative to find a new target and supporters as structure how to reach them. But the capability to understand the project, their needs and the ability to communicate clearly in English were essentials to perform in the project.

4. How much did you know about uterine fibroids before?

Franky speaking: nothing. I had never heard about this kind of fibroid before, this benign tissue of the muscular womb of the uterus.  This subject was completely new for me. I’ve learned through the work of the initiative that the word tumor is only the name for a swell and never ever shall be equalized with cancer. Fibroids are non-cancerous. I never knew that it existed neither that these fibroids are so common in so many women. And cause so much trouble.

5. In how far has your perception on uterine fibroids changed during your
work for the initiative?

When I entered in Uterus Myomatosus Initiative I became totally immersed in this subject to understand better in what exactly I was working with. My perception has being modified during all this month I stayed here because the more I learned about this kind of fibroid, more I knew the importance of education in this project for the society. I realized that there are so many women suffering from fibroid and that we still have a gap of information on internet about it. Now I know a little better what these people are facing to find the best treatment for the myoma, to relieve their pain with the objective to get back to the normal life again.

6. In your own words: please describe the work of the Initiative. What do they do and why do they do what they do?

Uterus-Myomatosus.net is an initiative that provide understandable information about fibroids to power women about all options of treatment, its risks and benefits, through the development and spreading of knowledge, allowing them to take the most correctly decision together with a doctor of their choice. They also offer a platform, the website, on which women can contact collaborative physicians, associated with the Initiative network, to solve doubts about the fibroids, if they want, stimulating women to look for a second opinion. It’s the interdisciplinary approach of a comprehensive uterine fibroid consultancy between gynaecologists and interventional radiologists – that’s what the initiative stands for.

Two different medical fields offer uterine fibroid treatments and these become unified visible on this platform by the cooperative network of experts who support the initiative. Only when these two groups of physicians work together collaboratively in consulting the advice seeking woman, then we can speak of a comprehensive fibroid treatment consultancy in the spirit of the initiative. Furthermore: All content is produced by an independent editorial team with e.g. professional medical journalists in partnership with an interdisciplinary medical advisory board, maintaining the content’s neutrality which is important for trustworthyness.

7. In your own opinion, who (people, companies, stakeholders, organisations) could support the Initiative’s work with what?

Our objective is related to: women, care and health. So I believe in companies that work with these fields to help us to spread more our initiative and achieve more women. We can’t forget the professionals that are in the center of this question like: obgyn physicians, Interventional Radiologists, hospitals, politicians and health care’s companies, their collaboration is so important for the maintenance and growth of the project as to spread the portal’s existence: uterus-myomatosus.net
 
But their most important ally are the women, because this initiative was built and is runned by and for them. They are the spokespersons of Uterus Myomatosus, the people that can spread the word, talk about our website to other women that need it, that can engage people to support us and also encourage who work on the site to continue with this topic and project.

8. You helped researching numbers of women affected by uterine fibroids and their related surgeries in European countries. What is the objective behind this task?

We believe that currently the fibroids don’t have the proper importance by society, even though every 3rd woman is affected. And 20% of them with fibroid related symptoms. The objective behind researching these numbers of women suffering from fibroids, undergoing treatment was to show to affected women that they are not alone, there are others in the same situation. Wether it’s e.g. myomectomy, hysterectomy or myomembolisation UFE as an organ-saving alternative to hysterectomy, it’s the hands of these women to find the proper treatment. Our aim was call the attention of associations, institutions and politicians that fibroid needs and deserves our care and attention by showing how huge actually the healthcare subject fibroid is in European countries and in how far a wrong treatment can cause too much costs.

9. What was the most difficult for you during your work and how did you solve it?

Our mainly difficulty was find people who were willing to collaborate with us and answer the questions sent by email. We get in contact with 26 Health
Institutions and Associations in five European countries and the email was replied for less than 5%. It’s sad to realize this. We’ve contacted this people again but they didn’t answer us, so we couldn’t get the results we needed. For now. Another difficulty was the time we had to collect these datas, in one month I had to enter in the project, understand it, study our target and how to communicate with them and also do the research. We made all effort we could to obtain the answers considering all we had to do. Nothing. Maybe this feeling of being left alone and being completely on your own is comparable to the situation of women who are confronted with the diagnosis fibroids for the very first time. Whoever likes to help us honestly, your support is welcome.

10. What is the biggest learning for you regarding Uterine Fibroids?


I’ve learned how the fibroid appears, its symptoms and treatment options, but my most important learning is that people simply don’t talk about, and is a common issue on women’ health. We don’t know what an uterus fibroid is unless we have one. We don’t see campaigns about fibroid, what is it, the importance of be alerted of the symptoms.
 
If you look for a doctor as soon as possible, you can avoid feel the symptoms and be submitted by more invasive treatments. We need urgently more visibility for this subject due to the importance and occurrence of it on the society.

11. As a Brasilian woman, what is your impression of the German health care system regarding uterine fibroids?

I read some information about it regarding a chart from the German ministry of health, but what I could see is that bureaucracy is existent. In Germany we also have the issue of consultation time that is insufficient compared to the time investigating the symptoms and carefully examining the patient. 

12. How did you experience working with the team of the Initiative?

I really liked work this month in the team of the initiative because I learned a lot about the medicine field, a subject I had never worked with, and also in help a project that cares with others and are impacting so many women’s life. It was rewarding to see the ideas being done and giving positive results and see so many people being helped by their website.
 
People that work in the project believe in what they do and are working with lightness and good humor to continue run the project and empower even more women. This passion and the opportunity to work in a project that is so important for women instigated and motivated me to work and face even the difficulties.
 
I felt that during my work here my growth as a person and professional was intense and wonderful. I feel that I have a new vision of health and new
insights in my area (Public Relations) too. Besides that, the opportunity to live and work with people that have different culture, gave me other perspective of German people and their culture. I loved the experience of being so close and know how they think and act daily.

 

13. What was your most convenient experience during your work?

This Initiative gave me the opportunity to work in social business area, know how it works and understand better the importance of Public Relation to develop its strategies. I also learned a lot about marketing in social media, its strategies and targets giving me other perspectives about this area and how it connect with PR.  
 
In addition to learn what is uterus fibroid I had the opportunity to understand better the German healthcare system and study some of the most important and influent Physicians and Health Associations. The most challenge thing I experienced here was to work with a subject that I had never worked with even in my country, understand it and define strategies and concepts in less than one month. Besides that, the opportunity to know other people and communicate with them was a really nice experience.

14. What is your advice for the Initiative, what should be their next goal in what amount of time and their next move?

I think is time to expand and structure the team, by contracting more people to work in the project and to be more known by the society, looking for more partnerships, sponsors and multipliers. Initiative Uterus Myomatosus currently needs seed finance resources to keep the project evolving and visibility to show people that they exist, these are the urgent issues in this moment. By doing it, they will get more close to their targets, achieving more women.

They have the chance to be a reference in distribution of trustworthy online content about uterus fibroids because they are the pioneers by offering this kind of neutral platform and social business model, combined with physician support. Is time to grow and show others the importance of their work developed in the project but this process is slow and will take some time. I believe that around one year this startup will have much more visibility and support they have nowadays and will be more set up as a social business company to fly high.

Berlin, July 2012

Two impressions of working with the team of the initiative:

1) The most impressive moment for the founder of the initiative:

  • Office-Everyday-Life at the Co-Working Space.
  • Juliane: „Raysa, please look for this and that info or ask someone who knows.“
  • Raysa: „Yeah, I’m gonna mail my obgyn in Brazil. Due to the time zone difference she should be at in her office at her practice now.“
  • Juliane: „?“
  • >>>>10 mins later…<<<<
  • Raysa: „Hey, I got her reply. What we are looking for is written there and there. „
  • Juliane: „:D“

So much on the topic Health2.0 in Brazil.

2) Besides, the Initiative attended the German parliament. On June 25th 2012 there was a congress about „Prevention in the field of health care in Germany – between Self Responsibility and Duties of Society“ and yes, we listened closely.

Raysa, future PR-Professional and supporter of the Initiative, along with Juliane (left), founder of the Initiative Uterus-Myomatosus.net
Raysa, future PR-Professional and supporter of the Initiative, along with Juliane (left), founder of the Initiative Uterus-Myomatosus.net

Of course we were curious on the numerous participants who are partly on our newly created „Yes-we-would-like-to-get-to-know-list“. So we used the chance to experience these people live. Here you’ll find more pics of the congress.

Mr. Dr. Montgomery, president of the German Medical Association and also a radiologist, speaking.
Mr. Dr. Montgomery, president of the German Medical Association and also a radiologist, speaking.

On the screen during his lecture we read: „The benefit of prevention is to reach different levels of patients at a time where they are mnotivated to talk about health and change their behaviour.“

Yep, Mr. Montgomery, we totally agree. This is why we speak of advice seeking women instead of patients here on our online-portal. We would like to fetch them and empower them with knowledge before they turn into patients. And then we would like to motivate them to visit a doctor in time who consults them comprehensively. From this point of view, we are working in the field of prevention in health care .

 

Thank you, Raysa, for your great work.

 

Like to join us?

You would like to work with us in the field of health2.0/ social business? You are excited about IT and doctor-patient-communication? or you are a number driven fan of statistics and love to interpret a huuuuge amount of data? You have a talent or strength of which you think fits perfectly to our work and helps us to run faster? You would like to support us? Then join us! Please write us how, introduce yourself, or apply on one of our vacant positions! We embrace people who are passion driven and  love to reinforce our message and doings.

 

Click here for a German version of this article.