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  • What is FemXX Health and what is its purpose?
    FemXX Health is a community platform for people suffering from endometriosis. Leveraging technology and medical expertise, we seek to advance knowledge-sharing to improve treatment of female-dominant diseases, starting with endometriosis.
  • Who is FemXX for?
    Our platform is for womxn who may be/are certainly experiencing symptoms of endometriosis. We use the term ‘womxn’ to be inclusive of non-binary and trans persons who can also face endometriosis (see our LGBTQIA+ Resource Hub).
  • What is endometriosis and who can get it?
    Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of the uterus grows outside the uterus. Endometriosis most commonly involves the ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial-like tissue may be found beyond the area where pelvic organs are located. Endometriosis can cause pain — sometimes severe — especially during menstrual periods. It can cause several dysfunctions in the body like exhaustion, digestive issues and fertility issues, among many others. Anyone who menstruates or once menstruated can experience endometriosis, and at any age. It is however, a severely under-diagnosed and under-researched disease, with the current statistic stating that 1 in every 10 women have endometriosis. You can read more about it here:
  • Why is endometriosis under-diagnosed?
    There’s a large gender data gap, especially when it comes to womxn’s health. This is often referred to as the ‘gender pain gap’. When womxn are underrepresented in medical research, it automatically puts womxn at a disadvantage when being diagnosed or treated for diseases. Additionally, conditions that disproportionately affect womxn have often been deemed unworthy of research funding and time. This has been changing, albeit slowly. Womxn continue to be the victims of ‘medical gaslighting’, a phenomenon wherein they’re told that their pain is normal or psychological, rather than a matter of concern. This is especially true in the context of endometriosis.
  • How do I register for the platform?
    You can register here with your email and a chosen password. You will be asked to choose a username, preferably an alias – find more about this in the Data FAQs below. After signing up, you will be able to browse a lighter version of the platform. For full access, you will be asked to fill your profile with our Endo survey, wherein you will be asked to answer questions about your symptoms, diagnosis, treatments, etc. There are questions where you can select from multiple answers, while other questions are open text fields where you can share your experience in your own words. Some answers are required while others are optional and can be filled in later. You can edit your answers later on your profile.
  • What will I see once I join the platform?
    Once you’re signed up and have created your profile, you can access the profiles of all our users and see their endo-journeys. We make recommendations on users who have similar symptoms or endo-journeys to you, so you can learn from their experience, learn more about that here. We also show you all the treatments that have been tried by patients with endometriosis, alongside reviews of each treatment.
  • Can I talk to others on the platform?
    We are currently working on a chat function to enable conversations with other users. Stay tuned!
  • Does FemXX offer medical advice?
    FemXX does not offer medical advice, we only help you connect with patients and experts in the field.
  • What does FemXX do to protect my data?
    The protection of your privacy and your personal data, especially your health data, is one of our most important concerns. It is crucial for us that our users feel safe on our platform. As a company based in Germany, we are subject to the European General Data Protection Regulation (EU) 2016/679, which we like because it sets out important rights for you (for more information, see section 8 "Your rights as a data subject" in our privacy policy). As a data processor, we have implemented numerous technical and organisational measures to ensure the most complete protection of your personal data. We follow two principles in our work: 1. Least Data: We only ask for and collect what is really necessary. Therefore, we also ask you to choose a code name, as it is not absolutely necessary to know your real name for the endo-profiles. We follow this principle in all surveys. Your email address will only be used for internal purposes and will not be shown to other members so that we can remain anonymous to them. 2. Privacy by Design: Every feature and every campaign is designed, after surveying (in the ideation phase) what privacy-friendly technology design should look like. So data protection is not an afterthought to us, but a key priority from the beginning. Please read our Privacy Policy so that you know which data processing partners we work with and how we implement the Data Protection Regulation at FemXX:
  • What can I do to remain anonymous?
    Your data will be used to display your Endo profile to you and other members so that you can connect and learn from each other. The more you share about yourself, the more helpful it can be for others. However, please be careful when it comes to identifiable data. If you would like to remain anonymous, please choose a code name that does not reveal your real name. In all free texts about your journey, please make sure that no conclusions can be drawn about your person. For example, you can write that you are a teacher who is on your feet a lot, but you should not write the name of your school. You can write that your godchild gives you strength, but you should not write their name. You can recommend your doctor, but you shouldn't write that they have their practice on your street... ;)
  • Will my data be used for other purposes?
    Short answer: No. Long answer: At FemXX, we are creating a large database of endo experiences, which will hopefully help many patients. In the future, this could also be important for scientific purposes, in order to research why certain treatments work for some patients and not for others, or to develop better, personalized treatments. However, we will NOT share your data with research organizations without your explicit consent. So if there would be a collaboration in the future, we will ask for your consent, which you can, of course, refuse. This is your decision and your data belongs to you.
  • What does it mean when a FemXX member is deemed "similar" to me?
    Every endo story is unique. Despite the uniqueness,how we can still learn from other endo-fighters. We talked to hundreds of endo-fighters and started to see parallels in their stories. We realised that there is often at least one other person who has had an identical journey to us, whether in terms of symptoms or diagnosis. With FemXX, we have made it our mission to collect as many endo stories as possible, so that all endo-fighters can find those who are facing similar conditions, and with whom they can share their story. So we talked to specialised endo experts and asked: What makes two endo patients similar to each other? Surprisingly, there is hardly any research on this. In consultation with an endo expert, we found that in principle, we can classify endo patients according to their diagnosis type. In addition, you can also compare symptoms experienced by endo patients. You can see these two points of correlation represented on your profile as: Endo-fighters who have many symptoms in common with you: What do we look at? We put all the symptoms into categories (e.g. "gastro" or "pain"). Then we look at whether two users suffer from the same category and then, within the same category, which exact symptoms are shared. What does this mean for your profile? Those with whom you have the most symptom categories and specific symptoms in common will be listed first in this section. Endo fighters who have a similar diagnosis: What are we looking at? According to the ENZIAN categorisation for endometriosis, there are 3 elements to a diagnosis: 1. the type of endometriosis (peritoneal, ovarian and deep endometriosis); 2. the location of endometriosis (e.g. bowel, Douglas pouch, bladder, etc.); and 3. the extent of the disease, often referred to as endometriosis stage (1 to 4). What does this mean for your profile? Those with whom you have the closest match in endo type, location and stage will be listed first in this section. In addition, you can filter yourself under "All endo profiles" and select specific symptoms, locations and endo stages for which you want to view profiles. You can also filter by how the endo fighters are currently doing. The latter is because we recognize that some patients would like to see that things can get better and therefore, filter for positive developments. Many others prefer to see others who may be on the same boat as them and find fellow sufferers. It's a personal choice that we want to account for. However, as endometriosis is a very complex and under-researched disease, it is still possible for two people with identical symptoms and diagnosis to have a completely different experience of the disease. What helped them may not necessarily help you in the same way. Please talk to a doctor if you are unsure or want to change your treatment regime.
  • Who is behind FemXX?
    We are Dana & Luise, two tech experts with a passion for equal, personalised healthcare. We founded FemXX because we are affected by endo ourselves and want to help ourselves and others. We believe in the power of science and technology for social change. It's time for a revolution in women's healthcare and we have an ambitious goal: to build the most comprehensive dataset of women's chronic disease experiences, starting with endometriosis. Let us close the gender health gap together with structured health data collected from patients worldwide.
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