Surveys & Interviews
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Awareness
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Product Development
Endometriosis is a unique disease. A long history of gender and social inequalities lead to the current situation in which patients still suffer from lack of proper treatment and social acceptance. Some may see a topic such as this as a minefield, but we saw it as an opportunity to expand our vision beyond the lab bench and create a project that truly addresses the issues felt by those affected by endometriosis. We elaborate further on these issues in the interview and survey section.
Our vision of integrated human practices is based on three pillars, all of which interact with and affect each other:
Our project was constantly adapting to feedback and new information. LactoBack has turned into something quite different than we originally envisioned, and that is a good thing. We are proud of the awareness we created in our community and are prepared to further plan the future of LactoBack. We understand the needs of patients and the medical community and are more informed about the process of bringing new medication from the lab to the pharmacy shelves.
Endometriosis is a disease too often ignored, and we hope to have made an impact.
We had a clear purpose for the extent of our project: even though we did not expect to develop a trial-ready medicine in the course of an iGEM project, we were engaged in designing a plan for the future development of LactoBack. To achieve that goal, we talked with experts such as Dr. Patrick Imesch, an endometriosis specialist at the Zurich University Hospital, Dr. Maries van den Broek, Vice Dean of Research at the Zurich University Hospital, and Virginia Franco, CEO of Yoni Solutions. This allowed us to have a better understanding of the whole process of creating new treatments, from an idea to the pharmacy shelf.
Our initial idea during the project development phase came from the arsenal of cancer therapies, as the pathology of cancer has a lot of similarities with endometriosis. This idea was to use natural killer cells with engineered chimeric antigen receptors (CAR-NK cells) to target the misplaced endometrial cells. With that idea in mind, we spoke with immunology professor Dr. Maries van den Broek, who told us about the challenges facing such a project.
Two major problems:
We were lucky to get an interview with one of Switzerland's foremost endometriosis experts, Dr. Patrick Imesch, who listened to our ideas and gave us feedback. He suggested that we should keep our treatment as local as possible and that we could use liposomes to deliver drugs directly to the cells, using an intrauterine disease to release the liposomes in the uterus. He also suggested we target specific estrogen receptors that are over-expressed in endometriosis.
What did pose a problem was that even if these estrogen receptors are over-expressed on the misplaced cells in endometriosis, we couldn't be sure whether that means that they would not also be overexpressed in the healthy cells in the uterus.
After some consideration, we came to the same conclusions as with Dr. van den Broek. Risking healthy cells wasn't worth it. On top of that, we did not find a lab in Zürich that could support us with building the liposomes.
However, we still implemented Dr. Imesch's advice and made it a point to keep our treatment as local to the problem source as possible. Since working in the uterus with bacteria or liposomes would be too much of a risk, we ended up working with the Vaginal Microbiome. This idea was something new, exciting and feasible for us.
We talked to Dr. Virginia Franco, CEO of Yoni Solutions, and Paulo Refinetti, the CTO, about the feasibility and benefits of our solution. Yoni Solutions is a Swiss company focusing on vaginal microbiome analysis and personalized probiotics for women with recurrent vaginal infections.
During our interview we addressed legal/entrepreneurial topics as well as technical aspects of our project. At first, they were sceptical about our approach of adjusting the pH, since monitoring the pH of the vagina can prove very unreliable and there haven't been many studies on it. But after discussing our lab results with them, they seemed optimistic about the possibility of treating dysbiosis by simply lowering the pH in the vagina. However, even though our idea would technically be viable from a biological point of view, a significant limitation for us is the strict regulations that Swiss law imposes on GMOs. This is something we had to keep in mind for our Ethical Considerations.
From the technical perspective, Yoni mentioned that there is limited available data concerning the composition of the vaginal microbiome in European women: it still needs broader investigation. Each microbiome is unique and symptoms may vary from person to person, which makes it hard to work with a one-cure-fits-all approach.
Finally, Dr. Virginia indicated that there is potential for improvement in the area of probiotic treatment. Most notably, probiotic treatment is meant to be taken as a prevention for vaginal dysbiosis or as treatment for early stages. However, for probiotic treatments to be effective, they have to be taken almost daily. After a certain stage, only antibiotics can help bring back pre-dysbiotic conditions. This made a more permanent solution interesting for us. Interestingly, Yoni mentioned that a permanent solution would be less economically interesting for pharma companies, making implementation more difficult. Lastly, just like Dr. Imesch, they suggested we locally apply our treatment through a cream or a vaginal suppository, since this would make the approval process easier.
If we plan to pursue the project after the jamboree, we have to keep in mind that each patient's microbiome has a unique composition. We should therefore consider personalizing our treatment to each patient's vaginal microbiome to reduce potentially unnecessary side-effects. Our target bacterium would depend on the bacterial composition of our patient.
Lastly, in our conversation with Virginia, as well as in the Lunch Lecture she held, she went through some of the steps of how their company went about making probiotics which are specific to each patient's microbiome.
Dr.Virginia defined four main points they had to go through:
Following these steps, Yoni managed to collect a big data base on the composition of diverse microbiomes. This makes it easier to compare healthy and unhealthy conditions as well as seeing which bacteria are mostly associated with dysbiosis. These screening methods would help us narrow down the choices of potential helper bacteria for our project and determine the components for personalized treatments.
After our talk with Yoni, we wanted to critically reevaluate our ethical considerations. The Lunch lecture on the ethics of synbio with Dr. Deplazes gave us a new perspective on what the controversial issues of genetic engineering are.
Using GMOs in human therapeutics is an issue because of current public emotions. Currently, even GMO-foods are not allowed in Switzerland. We must therefore accept that nothing resembling LactoBack will be available as an endometriosis treatment in Switzerland in the near future, but that should not stop us from asking whether it should be available, in other words, whether LactoBack is an ethically feasible project and should be further pursued.
The Swiss medical regulatory agency Swissmedic has a process for approving medicinal products containing genetically modified organisms with a single focus: safety for the patient and the environment. Therefore, we can say that safety is the primary factor leading to LactoBack potentially being approved one day, but the ethics of the project also relies on further questions. Thus, we will consider the following:
For the first question, we can confidently answer in the affirmative (see Safety Page).
The second question cannot be definitively answered, as we are far away from clinical trials. However, a study by Itoh et al. (3) showed that probiotic therapies using Lactobacillus actually helped alleviate symptoms in endometriosis patients. Importantly they also showed no side effects. Therefore, treating vaginal dysbiosis seems indeed to make a difference. As our treatment self-regulates, it can adjust to the optimal composition of the microbiome and sustain this composition continuously throughout the day, where traditional probiotics are less precise and rely on simply adding a fixed amount of bacteria at a certain time of day.
LactoBack, in its final form, is a self-regulating and personalized probiotic treatment, meaning it has the potential to treat dysbiosis just as well as current therapies but would require only a one-time, or at the very least, less frequent application (see Description Page). Additionally, the major advantage of our probiotic is that, not only does it require rare intake, but it also patrols the body so that it can act as soon as dysbiosis starts to return. This means that the patients do not get to the point where they have to go to the doctor, and where the imbalance could already be having other effects in the body - such as the onset or worsening of endometriosis. This leads to less doctor visits and less strain on the medical system.
We can conclude that patients have no fundamental opposition to GMO treatments, as long as they address these concerns. With regards to the acceptance of GMO treatments, we also learned a lot from our lunch lecture with Dr. Deplazes: much of the hesitation concerning GMOs come from the assumed limited capacity to control them. This is especially relevant with product development, since we would have to market our product in a way that is appealing to the general public. These topics were thoroughly addressed on the Safety Page.
In conclusion: During the project, all ethical and safety guidelines were respected. We are convinced that LactoBack would be safe, and that its focus on one-time application and the use of resident bacteria from the healthy vagina to continuously patrol against dysbiosis makes it a significant improvement over current treatments.
In the summer, our iGEM team organized a Swiss Team Meetup in collaboration with the StudentBioLab, the University of Lausanne (UniL) and the Swiss Federal Institute of Technology in Lausanne (EPFL) iGEM teams. The Swiss Meetup gave us the opportunity to exchange our project ideas and gather valuable feedback from the two other Swiss teams, while giving us the chance to connect with each other over a weekend in Zurich. We presented our projects to each other and held a mock judging session with advisors and iGEM alumni. We gained valuable insights, such as on the importance of a kill switch, which we implemented on our Safety Page. We also realized that it would be critical to thoroughly explain why LactoBack has benefits over existing probiotics.
After talking with Dr.Imesch and Dr.van den Broeck, we re-orientated our project. At first, we wanted to specifically target pathogenic endometrial cells and eliminate them. Thanks to their expert input, we realized that targeting the vaginal microbiome would be more feasible and safer. Following these realizations, the Wet Lab could start planning LactoBack on a molecular level.
With valuable input from Yoni solutions on our product design and ethical considerations regarding the validity of our solution we decided how the future of Lactoback should look. For now Lactoback will be a genetically engineered probiotic treatment, personalized to the specific composition of every patient's vaginal microbiome, designed to lastingly stabilize the vaginal microbiome permanently inhibiting the arisal of dysbiosis and need for antibiotics. Both Dr.Imesch and Yoni suggested a vaginal administration such as a vaginal suppository.
From the beginning of our project, it was important to us that patients have their voices heard and their needs met. At the same time, we wanted LactoBack to be built on a solid scientific foundation and to meet the needs of healthcare professionals as well. So, we organized two separate surveys, as well as multiple interviews to assess the current situation in endometriosis treatment as well as social topics to dictate our further approach. The goals of our surveys and interviews were:
We Created two Surveys, one addressing healthcare personnel such as Gynecologists, general practitioners, and other medical staff and the other addressing endometriosis patients. For the Interviews, we talked to 6 patients who filled out our survey. Two of them sadly did not give their permission to publish their transcript. The two doctors we talked to, Dr David Scheiner and Dr Andreas Günthert both are experts working in endometriosis clinics.
Awareness
An important takeaway from our surveys and interviews was the lack of public awareness, education about female health, and understanding for the struggles that endometriosis patients have to deal with.
This significantly affected our project and led us to focus a lot of time and resources on educating our community on endometriosis and creating awareness.
We saw how hard the disease was on the mental health of patients and noticed how much they valued it when their struggles were heard and validated.
This led to our Patient Project.
Vaginal Dysbiosis
Importantly we noticed how little patients knew about vaginal dysbiosis.
Therefore we set out to find experts in the field to figure out why this might be the case.
We got some input from our doctors' interviews but our biggest source of information was YONI.
We also considered this aspect in our awareness part. See the sections on Tize, Wikipedia, and Lunch Lectures.
Project
We also learned a lot about the needs of patients and medical professionals, sometimes to our surprise.
In the beginning, we were planning a tampon as a potential application method, which turned out to be very unpopular in the surveys.
We were also pleasantly surprised by patients' interest in GMO medications, which motivated us to further pursue our product development strategy.
In the beginning, we were planning a tampon as a potential application method, which turned out to be very unpopular in the surveys.
This affected our product development, as we learned from the surveys that patients prefer an easy and non-invasive application method.
We were also pleasantly surprised by patients' interest in GMO medications, which motivated us to further pursue our product development strategy.
We received 315 answers, of which 191 delivered usable data points. All patients accepted a release form, which is available if requested. Data analysis was done with R, using the Tidyverse package. We received plenty of answers in the comment fields of the survey not plotted here, but which also influenced our project.
Respondents had a very diverse age distribution, with a few older, post-menopausal former patients.
Pain and fatigue were the most frequent symptoms. Only a few respondents were diagnosed with vaginal dysbiosis, prompting us to review the connection between dysbiosis and endometriosis. Later in interviews, we discovered most of the patients didn't know what vaginal dysbiosis was or what symptoms it could entail. In our interview with Yoni, we found out that even professionals struggle to define what exactly dysbiosis entails. This is due to each woman having an individual vaginal microbiome composition: What might be a dysbiotic condition in one woman might be healthy for another. Therefore chances are high that many patients wouldn't even know if they had it or not.
As expected, many respondents already felt symptoms with their first period, however, the diagnosis was delayed by an average of 8.8 years. We spoke about this issue in our interviews with doctors and came to the conclusion that a lack of awareness, both in patients and general practitioners might explain this difference. This motivated us further to pursue our awareness campaign.
The most frequent option chosen for the current therapy was “other”, indicating a flaw in our survey. We did not add any pain therapy options (such as painkillers or physiotherapy) despite that being very frequent among patients, as we later discovered from interviews and comments.
As we already saw in the histogram above, the waiting time for diagnosis is objectively and subjectively too long. Respondents rated their current treatment as mediocre and were almost unanimous in their demand for new treatment options. Interestingly, respondents were quite tolerant of a potential GMO-based treatment, which we did not initially expect.
Lack of side effects and easy application were the priorities for new treatments, while rare intake was hardly rated as important. We discuss the implications of this in our ethical considerations [link].
Patients were given the possibility to rank different application methods. Oral application was by far the most popular option, and operations were the most unpopular. Direct vaginal application (such as a cream or suppository) was not listed as an option, which was a mistake on our part. We interpreted this pattern of answers such that patients prefer a non-invasive, easy application.
Respondents had a mixed view of their treatment by healthcare professionals. While they seem to trust the medical judgments of doctors, it is especially psychological needs that are not met, and patients do not feel as if they are taken seriously. We already saw that many respondents had to wait a long time before being diagnosed, and many were misdiagnosed and told that their symptoms were normal.
These answers showed us the clear need for more awareness, concerning endometriosis and women's health more generally.
In total, we received around 52 answers but only 24 delivered usable data points. All respondents accepted a release form, which is available if requested. Data analysis was done with R, using the Tidyverse package. We received plenty of answers in the comment fields of the survey not plotted here, but which also influenced our project.
Most respondents were gynecologists or nurses working in endometriosis centers.
There was a very diverse range of experience among respondents.
Application preferences closely mirrored those of patients, with respondents strongly preferring an oral application. Interestingly, healthcare professionals did not seem to be as strongly against operations as patients.
The people in the field were asked to rate their opinions on a variety of topics related to endometriosis and our early project. Interesting are the differences in patient answers: patients were far more tolerant of GMO medications than healthcare professionals indicated in their surveys. Healthcare professionals were also more optimistic concerning public awareness of endometriosis.
Dr. Scheiner is the head of gynecology at Zurich University Hospital.
For him, the suspicion of endometriosis arises quickly during consultations, but a clear diagnosis is only possible with an operation.
In his opinion, trained gynecologists should also be able to identify it easily based on the description of symptoms.
It is also possible to strengthen a suspicion through treatment, but this is often rather vague.
This uncertainty leads to long paths of suffering for the affected.
Especially the place where women seek medical support has a big influence on how they are treated.
A general practitioner will not treat them with the same care they need as a gynecologist, causing more suffering.
What is most important to reduce this suffering is broad awareness in the general public.
Women have to know what endometriosis is.
Problems with the Healthcare System
Endometriosis isn't a life-threatening condition, so the healthcare system doesn't provide as much support, presenting a challenge for medical practitioners.
Often, medical personnel lack the time or capacity to adequately address the patient's needs and concerns.
While those affected have a need for conversation, it's challenging for doctors as talking doesn't generate income.
A further cause for frustration is that there is no cure, and the available options for action are limited.
Extensive surgeries often yield minimal relief. Many solutions, such as hormonal pills, come with side effects for a considerable number of women.
Opting for surgery only makes sense when the level of suffering is significantly high, and if surgery is deemed necessary, it is a complex procedure, even more complicated than something like tumor removal.
Necessary Changes in Medical Research
For now, the most important part is to get a clear understanding of how endometriosis arises.
What limits this research is how much money can be made by researching this.
Also, endometriosis is a multifactorial disease, which makes an easy solution very tricky.
The go-to therapy is hormone treatment, which patients are quite sick of, so alternatives are needed.
How Is Dysbiosis Caused?
Antibiotics, infections like yeast or other STDs can cause dysbiosis.
Also, strong menstrual bleeding can change pH since blood is alkaline, leading to dysbiosis.
The difficult thing here is that dysbiosis is only diagnosed when the problems have already arisen.
Political Engagement in Switzerland
Research, as well as state funding, is very important for improving the situation, but the lobby fighting for endometriosis is too small since it isn't life-threatening, and the current treatment can be satisfactory for some people.
In general, Switzerland is behind with endometriosis treatment and care.
Especially since the awareness of the public isn't good enough, there isn't enough motivation for change.
For this reason, awareness is one of the most important things that have to change!
Also, on the medical side, new and better therapy concepts have to be developed and implemented.
Dr. Guenthert is a specialist in gynecology who deals with a diverse range of patients. He treats younger patients experiencing symptoms for the first time, as well as older patients with complex medical histories that significantly impact their daily lives due to pain. Dr. Guenthert mentions that while a diagnosis can be given relatively easily, a definitive confirmation requires an operation. Other methods, such as saliva tests or biomarker tests, aren't precise enough for clinical application.
Current Treatment
Present treatments include hormonal suppression, pain therapy, and surgery.
Positive developments are occurring on the clinical side, and awareness is gradually increasing.
However, there still aren't satisfactory treatment methods available, considering that the field is relatively new.
The focus of treatment has shifted significantly. Individualized therapy forms, such as fulfilling the desire for children, are becoming more important. Surgeries are now conducted with more restraint and caution. Many patients wish to move away from hormonal treatment, which can be challenging and frustrating due to the limited alternative treatments available.
Current Research
In the realm of research, crucial topics that need attention are the causation and early diagnosis of endometriosis.
While progress is being made, economic factors pose challenges as it is not a life-threatening condition, despite evidence showing that endometriosis causes significant economic damages.
Current clinical Situation
Much is happening in the medical field, but the situation becomes difficult when patients' goals or expectations aren't met, often due to inadequate resources accessible to the medical staff.
This leads to dissatisfaction with medical personnel.
Social Situation
The stigmatization of women's health makes it challenging for women to live with the disease or seek help, as it is often not openly discussed.
However, awareness in the general public is increasing. Implementing comprehensive sex education in schools would be beneficial, and there is a need for political action to catch up.
Milena experienced her first symptoms at 16 and her endometriosis has only gotten worse since.
She experiences extreme pain and can even lose consciousness during sex.
The disease has progressed to a point where there are endometrial cells even in her joints and she will probably have to remove her uterus.
Milena has had very negative experiences with doctors, who have hardly taken her seriously, she has even been laughed at before she finally found her current endometriosis center.
She is rather skeptical of the LactoBack system and thinks that researching potential side effects must be a priority, especially since that has been her main problem with all previous treatments.
Milena believes both doctors and young women must be more informed about female reproductive health, and medical professionals, employers, and families must take women seriously when they describe symptoms.
Nicole had been experiencing pain for a long time - always being told it was normal - before she was finally diagnosed with endometriosis.
She is unhappy with the side effects of current treatment methods especially since her personality changed a lot due to the hormones.
She talked about how hard it was for her and her boyfriend to adjust to the person she became due to the treatment.
Removing the uterus is now even an option that she is considering.
However, it's still a very difficult decision for her, since Nicole is still unsure about whether she might desire to have children in the future.
She is open to any treatment that would improve her suffering but is skeptical of LactoBack since she would prefer a treatment that tackles the root of the problem, rather than just improving symptoms.
Nicole demands a change in the health insurance system: she has to pay for all her treatments herself since her health insurance only covered endometriosis for two years."
Nora has been experiencing extreme pain since her first period and has been taking painkillers ever since.
For a long time, she believed she was just weak compared to other girls who could more easily handle period pains.
She was recently diagnosed with adenomyosis and has used the pill and an IUD, neither of which is satisfactory since she still needs painkillers and inserting the IUD was very painful.
Nora is excited about the LactoBack approach and had never heard of vaginal dysbiosis, but she hopes that we find a method that doesn't require frequent application.
She believes it is very important that we spread awareness of endometriosis and finally take women seriously when they report symptoms.
Intro
When we decided on our project, we suspected that education and awareness on endometriosis would play a big role.
Decades of shame around female health and menstruation have led to a situation where there is a fundamental lack of conversation about this topic.
This leads to a lack of research and clinical support. People with endometriosis face challenges in all aspects of everyday life and have trouble receiving timely and appropriate care.
After evaluating our surveys and talking to patients, doctors, and other experts we could confirm that the lack of awareness is even worse than we initially suspected.
Something had to be done.
Goal
Goal
We came to the conclusion that educating especially younger generations (15-25 years old) would maximize the impact we could have.
As we saw from our Survey and Interviews, a big problem with endometriosis is the long time until diagnosis.
With an average time until diagnosis of more than eight years, many of the affected have to endure unnecessarily prolonged periods of suffering.
By helping younger people clearly understand endometriosis and its impact, we enable those who are affected to get the knowledge and confidence to seek out the help they need as soon as possible, thus shortening the time until diagnosis.
Additionally we increase the understanding of the condition among their peers and the general public.
This enables them to offer the necessary support to those dealing with endometriosis.
However due to our unconventional therapeutic approach through synthetic biology we also wanted to show the public the potential that synthetic biology holds in treating such a disease.
With the Lunch Lecture project we wanted to target a more "academic" crowd. By organizing three public Lunch Lectures on different topics, all taking place at the University of Zurich, we aimed at approaching endometriosis and gender medicine from the medical, entrepreneurial and ethical points of view, always exploring the potential of synthetic biology in its treatment. These lectures were designed to attract and inform on endometriosis and related topics, specifically the vaginal microbiome, since it is crucial to our project. The lectures proved to be an important link between the social and scientific part of our project. Not only did we hear from professionals from a broad spectrum of disciplines, but also - by taking inputs in the form of questions and conversations with the audience and speakers - we got valuable feedback about our project. To deepen this exchange, each of the lunch lectures was followed by an “apero”, where the audience could further engage with the team, the specialists and other participants.
On the 2nd of June, Dr. Kathrin Rauen spoke on gender bias in mental health care. Dr. Rauen is part of the Sex and Gender Medicine committee of the University Hospital of Zurich. She is a specialist in Neurology and has sex- and gender-specific depression as one of her research focuses.
She analyzed the so-called “gender gap” in medical research, and gave an overview on the psychological aspects of endometriosis: with the heavy symptoms it may cause, it is fundamental to understand the impact this condition has on the mental health of the patients. Besides interesting statistical data, Rauen brought valuable inputs from a first-person perspective. Her talk was followed by a presentation by UZurich team members about what endometriosis is and how our project is working to tackle it.
On the 2nd of October, Dr.Virginia Franco, CEO of Yoni Solutions together with Mr. Siyuan Tao of the EMPA Institute for Material Sciences, talked about the human microbiome and its therapeutic potential. Dr. Virginia Franco is a gynecologist who created a startup for profiling the vaginal microbiome of patients. She gave an introduction about the vaginal microbiome and the important factors for keeping it stable, using a didactic approach that helped to engage the audience. She also briefly approached the more marketing-oriented side of microbiome research and products. Siyuan Tao gave a more scientific flavor to the presentation, presenting state-of-the-art research on probiotic delivery and how material sciences can optimize it. By studying bacteria-material interactions and self healing materials his research group is developing materials that can serve as matrices for beneficial bacteria to support wound healing.
In the 9th of October, Dr. Anna Deplazes Zemp, an expert in synthetic biology and biomedical ethics, urged the audience to think critically about the many ethical questions posed by the recent advances in synthetic biology and genetic engineering, in a relaxed and very interactive manner. After the Lecture many students stuck around to participate in a stimulating discussion that gave us input for our future ethical considerations.
During each Lunch Lecture, we also updated the audience about the status of our project before each lecture, thereby giving them an introduction to synthetic biology and iGEM. These lectures were very popular and students from all possible fields showed a strong interest in our project. After learning about synbio, many participants were in fact very interested in joining the next UZurich iGEM team! Since we established this brand at our university, we plan to continue the Lunch Lecture format with our partners at Student Biolab, educating people on synthetic biology and offering a platform for future iGEM teams.
When talking with patients we noticed that a lot of people affected by endometriosis feel unheard and excluded. Together with the photographer Caroline Ulrich we created a digital photography book to address this. The photographs are inspired by the pain that patients go through, and are accompanied by real quotes from patients we collected beforehand. We organized an exhibition of the photos at the University of Zurich to promote the book, using supplementary posters to explain our project. This exhibition was at the very center of the campus and viewed by many students. By addressing endometriosis in a more emotional way we could reach a broad audience, giving the affected a voice and showing clearly the pain that they are dealing with on a daily basis.
You can download the ebook here.
The third group we targeted was the youth.
It is unfortunately frequent that women's pain is normalized. We heard from patients that severe pain is often downplayed as period pains and they feel ashamed to voice their (totally legitimate) concerns. Doctors often aren't educated enough about endometriosis and don't take their patients seriously. In interviews patients even reported being gaslit by their doctors. All of this leads to prolonged suffering, especially in the time until diagnosis. Older patients told us that this suffering could have been mostly prevented if they had known about their disease earlier. For this reason we wanted to inform the younger generations that might be currently struggling with these issues and give them clear directions on how to find the help that they need. For this reason we wrote two articles in different youth magazines.
Gummi Love: Together with Gummilove, an organization focused on promoting safer sex practices, and Sarah, a patient, who gave a lot of helpful input on her suffering we created a "Guide to Endometriosis."
We wanted to help young individuals understand endometriosis, from recognizing its signs to navigating the diagnosis process with doctors and managing its impact on daily life.
We wanted to give them as much information so that their suffering can be reduced as much as possible.
[https://www.gummilove.ch/fact/endometriose/] or as a PDF [Gummilove Fact Endometriosis (English)]
Tize: For "Tize" the largest Swiss youth magazine with a monthly readership of over 14,000 high school students, university students, and apprentices, we wrote an article on synthetic biology and the broader significance of scientific research.
Our article used the lack of research in Endometriosis as an example, demonstrating that seemingly irrelevant research can indeed serve a crucial purpose.
[https://www.tize.ch/beitrag/die-relevanz-des-irrelevanten-forschung-in-der-biologie/] or as a PDF [Tize Research (English)]
Workshops such as these are an iGEM classic, for good reason. We were able to educate students from two different high schools in synthetic biology, and using our project as an example, show them the potential of synthetic biology to treat diseases like endometriosis. The first workshop took place at the Kantonsschule Wettingen, and consisted of a theoretical input on synthetic biology and endometriosis.
The second one took place at the Life Science Learning Center at the University of Zurich and consisted of a whole day in the lab where we did experiments with restriction enzymes, gel electrophoresis and transformations, with the result of RFP producing bacteria that the students could draw with.
We were even able to use plasmids from our own wet lab experiments.
Both the workshops were very well received, and we hope to have made an impact on those students, and were able to show them how much is possible using synthetic biology.
For most of these students, it was also the first time they had heard about endometriosis.
Frequently, Wikipedia is the first ressource people refer to when they have a question, a concern or simply want to know more about a topic. The importance of internet searches for awareness cannot be overlooked, and has grown exponentially in the last years[1.]. Endometriosis research has followed a similar trend (considering that the statistics shown are weighted)[2.]. In spite of more recent research on the correlation between vaginal disbyosis and endometriosis, no page on “endometriosis” mentioned this connection.
Therefore, we added a section on vaginal dysbiosis in the Wikipedia page for endometriosis[3.] and contributed to pages in the three official languages of Switzerland (German, French and Italian), as well as English, Portuguese and Russian, languages whose global reach by number of speakers is paramount for reaching a broader audience. For each language, we have added 1 to 2 paragraphs that explained how this correlation comes about.
A growing body of evidence has shown a correlation between an imbalance in the vaginal microbiome and the appearance of endometriosis.[56] This correlation is mediated by an immune system overload in the context of retrograde menstruation, in which it fails to detect and kill cells that come outside of the vaginal environment. By disrupting normal immune function, dysbiosis leads to elevated levels of proinflammatory cytokines, a compromised immunosurveillance system and altered immune cell profiles. Indeed, the activation of Toll-like receptors in macrophages leads to a greater activity of this immune cell type. They, in turn, secrete factors (such as the pro-inflammatory cytokine interleukin 8) that help creating an inflammatory environment, ultimately favoring the proliferation and adhesion of endometrial cells.[56][57]
Eine wachsende Anzahl von Studien hat eine Korrelation zwischen einem Ungleichgewicht im vaginalen Mikrobiom und dem Auftreten von Endometriose gezeigt.[47] Diese Korrelation wird durch eine Überlastung des Immunsystems im Kontext der retrograden Menstruation vermittelt, bei der es versagt, Zellen zu erkennen und zu eliminieren, die außerhalb des vaginalen Umfelds gelangen. Durch Stören der normalen Immunfunktion führe eine "Dysbiose" zu erhöhten Mengen proinflammatorischer Zytokine, einem beeinträchtigten Immunüberwachungssystem und veränderten Immunzellprofilen. Tatsächlich führt die Aktivierung von Toll-like-Rezeptoren in Makrophagen zu einer verstärkten Aktivität dieses Immunzelltyps. Diese wiederum sezernieren Faktoren (wie das proinflammatorische Zytokin Interleukin 8), die dazu beitragen, ein entzündliches Umfeld zu schaffen, was die Proliferation und Adhäsion von endometrialen Zellen begünstigt.[48][47]
Evidências crescentes sugerem uma correlação entre um desequilíbrio da microbiota vaginal (disbiose) e o surgimento da endometriose. Essa ligação é mediada pela sobrecarga do sistema imune no contexto da menstruação retrógrada. Se, habitualmente, o sistema imune seria capaz de detectar e eliminar as células endometriais fora do ambiente vaginal, a capacidade de detecção diminui em situações de desequilíbrio da microbiota.[18]
De facto, a disbiose leva a níveis anormais de citoquinas inflamatórias e um funcionamento anormal das células de defesa. Nesse quadro, a ativação de receptores tipo Toll em macrófagos cause uma maior atividade desse tipo de célula. Por sua vez, esses macrófagos secretam fatores pró inflamatórios, como a interleucina 8, que acabam por favorecer a proliferação e adesão das células endometriais em outros tecidos.[19][18]
Una collezione crescente di evidenze ha mostrato una correlazione tra il disequilibrio del microbioma vaginale e l'incidenza dell'endometriosi. Questa correlazione è mediata dal sovraccarico del sistema immunitario nel contesto della mestruazione retrograda. Il sistema immunitario non riesce ad identificare e neutralizzare le cellule che si recano fuori dall'ambiente vaginale.[42] Disturbando la funzione immunitaria, la disbiosi conduce a elevati livelli di citochine proinfiamatorie, arreca dani al sistema di immunosorveglianza, e altera i profili delle cellule immunitarie. Infatti, l'ativazione dei recettori Toll-simili nei macrofagi, conduce a una maggiore attività di questa categoria di cellule. I macrofagi, a loro volta, secernono fattori (quali la citochina pro-infiammatoria interleuchina 8) che contribuisce allo sviluppo di un ambiente infiammatorio, favorendo la proliferazione e adesione delle cellule endometriali.[43][42]
Outre à cette recherche, un nombre croissant d'études montre une corrélation entre le déséquilibre dans le microbiome vaginal au-délà des Fusobacterium (y inclus des genres comme Prevotella et Gardnerela) et l'apparition de l'endométriose. Cette corrélation est médiée par une surcharge du système immunitaire dans le contexte de la menstruation rétrograde, où il échoue à détecter et à tuer les cellules qui sortent de l'environnement habituel32,33.
Ces études proposent que la chaîne d'évènements commence par la perturbation de la fonction immunitaire normale par les espèces invasives. Ainsi, la dysbiose entraîne des niveaux élevés de cytokines pro-inflammatoires, un système d'immunosurveillance compromis et des profils de cellules immunitaires altérés. En effet, l'activation des récepteurs de type Toll dans les macrophages entraîne une plus grande activité de ce type de cellules immunitaires. À leur tour, elles sécrètent des facteurs (comme la cytokine pro-inflammatoire interleukine 8) qui favorisent la création d'un environnement inflammatoire, favorisant finalement la prolifération et l'adhésion des cellules endométriales hors de leur tissu d'origine32,33.
Всё больше исследований указывают на связь между дисбалансом влагалищного микробиома и появлением эндометриоза[6]. Объяснение этому является перезагрузка иммунной системы в случае ретроградной менструации, при которой не удаётся распознать и уничтожить клетки, которые выходят за пределы вагинального пространства.
Через нарушение действия иммунной системы, вагинальный дисбиоз приводит к повышенным уровням провоспалительных цитокинов, нарушению функции иммунологического надзора и также к измениям иммунологического профиля. Активация толл-подобных рецепторов макрофагов приводит к их повышенной активности. Активированные макрофаги секретируют факторы (как, например провоспалительный цитокин интерлейкин-8), которые окончательно способствуют размножению и адгезии клеток эндометрия.[56][57]
We used our instagram page to keep our community updated on our team's progress, while also regularly educating about synthetic biology and endometriosis. We were able to build quite a following while expanding the horizons of both patients and scientists.
Our awareness efforts were very well received, from patients and non patients alike. As we had expected from the survey, most people felt that too little research is being done to cure endometriosis, and that there is generally little understanding for patients. We hope that our efforts have educated a few people who had not before heard of this disease.