We were recently contacted by a student of Keele University who is doing her research project on MRKH.   Whilst this is not an MRKH Connect led research study we are always interested in sharing research that we believe will benefit the community and as such we are sharing the details below.   If you choose to complete the survey it will take less than 10 minutes. 

Hi everyone,

I’m a final year student at Keele University, UK who is diagnosed with MRKH. I have chosen to do my final year research project on “How education is impacted and affected by medical diagnoses, unseen, and rare conditions”.

The aim of the research is to explore variations of educational experiences, which may be influenced by having a diagnosis of a rare and often unheard-of, medical condition. By participating in this study, you are helping to provide valuable insights into experiences of education and/or schooling whilst living with a medical condition. It is hoped that the research will help to raise awareness around the impacts and experiences of lesser-known or hidden health conditions and their impact on a person’s educational experience. A medical diagnosis at any age can be confusing and mentally draining for both the recipient and family members, especially when it is a condition that cannot easily receive assisted help. Unseen and rare conditions make this issue significantly more common. By conducting this research, I hope to highlight that increased focus on hidden disabilities/medical conditions is essential within education and how further research and policy focus may help improve the experiences of people living with these conditions during their education/schooling.

If you have previously been, or are currently being educated in the British school system (at any study level), please consider participating in my research study. Below is a link to a questionnaire which you can fill out completely anonymously, at no point will your identity be revealed. I hope to receive insight on a diverse range of personal journeys through education. This study is not limited to the current school system and so, if you have been out of education for some years, you can still take part in this study. There is no age limit to taking part in this study, which will allow me to also explore whether and how the British education system has changed in respect to accommodating individuals with hidden disabilities/medical conditions over time.

Anonymity is guaranteed during the study, no identifiable data will be recorded (e.g., names, email addresses etc). As the study will be advertised in this support group, I urge all participants to reach out and talk if necessary, which can also be done in the Facebook group anonymously. Please note that if you choose to respond to the questionnaire, you will be asked to reflect around how and whether your schooling/educational experience was impacted by your MKRH diagnosis.

The link to the questionnaire is here.

If this is likely to cause you some distress or discomfort, please consider carefully whether you wish to continue with this questionnaire.

Please also note that additional mental health support is available online at Mind https://www.mind.org.uk/information-support/helplines/ and Samaritans https://www.samaritans.org/how-we-can…/contact-samaritan/

If you have any questions regarding the study then please feel free to post any questions anonymously on the post in the MRKH-UK Facebook group.

Thank you