- 58
- 8 616
MRKH Connect
Приєднався 16 лис 2020
MRKH Connect was founded in 2014 to relieve and promote the relief of those diagnosed with Mayer Rokitansky Kuster Hauser (MRKH) Syndrome and to provide support both to them and their families.
How to navigate early diagnosis - Isa Larnert
Isa Larnert, MRKH Advocate based in Sweden, shares her experiences of how to navigate early diagnosis, unforeseen challenges, and the ways and days to healing and happiness!
Connect LIVE 2024 was an in-person community led event, featuring speakers from the community on lived experiences, international presentations, and panel discussions in London, UK. Inspired by our MRKH Connect with Friends events, our annual event is an opportunity to come together to connect, learn and laugh in an informative peer led environment. We are happy to be able to share some of the presentations from this event, please remember these were recorded live and so sound and recording quality, and captions vary in some cases. We can’t wait to do it all again next year.
Find out more about the work we do www.mrkhconnect.org
Find our events: www.mrkhconnect.org/events-listing/
Join our community: www.mrkhconnect.org/register/mrkh-connect-membership/
Please note none of these presentations either intend to, or directly constitute, professional or medical advice but we hope are an informative resource.
Connect LIVE 2024 was an in-person community led event, featuring speakers from the community on lived experiences, international presentations, and panel discussions in London, UK. Inspired by our MRKH Connect with Friends events, our annual event is an opportunity to come together to connect, learn and laugh in an informative peer led environment. We are happy to be able to share some of the presentations from this event, please remember these were recorded live and so sound and recording quality, and captions vary in some cases. We can’t wait to do it all again next year.
Find out more about the work we do www.mrkhconnect.org
Find our events: www.mrkhconnect.org/events-listing/
Join our community: www.mrkhconnect.org/register/mrkh-connect-membership/
Please note none of these presentations either intend to, or directly constitute, professional or medical advice but we hope are an informative resource.
Переглядів: 75
Відео
Let's talk about relationships - Gabs Nwenwu
Переглядів 183 місяці тому
Gabs is co-creator of @yourpace.dsd . Gabs is an inspirational voice within the DSD community and she shares her experiences of disclosure and intimacy within relationships. Connect LIVE 2024 was an in-person community led event, featuring speakers from the community on lived experiences, international presentations, and panel discussions in London, UK. Inspired by our MRKH Connect with Friends...
The power of peer support - Chloe Morley
Переглядів 123 місяці тому
Chloe was appointed MRKH Connect Youth Leader in early 2024 after completing the Youth Program herself in 2024. The Youth Program, designed to support MRKHers in their early stages of diagnosis is open to all MRKHers ages 18-25. Chloe shares her experiences of diagnosis and how peer support in this program has been a game changer for her. Connect LIVE 2024 was an in-person community led event, ...
What is MRKH? - Amy Lossie
Переглядів 263 місяці тому
Amy is one of the first global advocates to spearhead MRKH support and awareness, and is admired by the global MRKH community. She is unstoppable, informed, and has changed the international landscape for MRKH everything! She is the President and co-founder of the Beautiful You MRKH Foundation in the USA and earned a PhD in Human Genetics, channeling this expertise to transform health and well-...
Cultural Differences and Overcoming Shame - Aysha
Переглядів 1896 місяців тому
Aysha is an MRKH advocate, in 2020, she was invited to speak on a new podcast called Her Story Inspires, which was all about women sharing their inspirational stories to inspire others. This was a turning point for Aysha and from that point she finally found her confidence and voice. She then started writing blogs for different peer groups to share her experiences and help others realise that t...
MRKH Empowerment: How to navigate body acceptance, intimacy and self-love moments - Ellamae
Переглядів 446 місяців тому
Ellamae, the stigma shaking powerhouse, is founder of @vavawomb_ and @mindovermrkh, she is a community and events founder, advocate, speaker, podcast host, workshop facilitator, poet and all round creative. Her talk focuses on acceptance, intimacy and finding your self love moments. Connect LIVE 2023 was an in-person community led event, featuring speakers of MRKH lived experiences, internation...
Disclosure Dilemmas - Stacey
Переглядів 96 місяців тому
Stacey is a poet and MRKH advocate. Her goal is to use poetry to inspire and share a message that remind others that are apart of the MRKH and infertility community that they still have a purpose and their body still has a purpose. Connect LIVE 2023 was an in-person community led event, featuring speakers of MRKH lived experiences, international presentations, and panel discussions in London, U...
Karen’s Adoption Journey
Переглядів 428 місяців тому
Karen joined Charlie for a chat a while back to talk about her journey adopting her 2 children. Karen was interested to share her journey to help others either going through the process or interested in learning more about adoption. This is a personal experience where Karen shares her journey, her experiences along with some advice for anyone wishing to learn more and we are grateful for the ti...
MRKH and Diversity - Hasna and Badia
Переглядів 81Рік тому
Join Hasna and Badia in conversation sharing their experiences of MRKH and why representation is so important. Whilst some of thd experiences are not necessarily culturally specific, the taboo, stigma and often shame in different cultures following a diagnosis of MRKH can make it feel like a terribly lonely place. But these two women share how they have turned their pain into power and challeng...
Vaginal lengthening: Options and experience - Ellamae
Переглядів 872 роки тому
Ellamae, the stigma shaking powerhouse, talks about the options around vaginal lengthening, if you decide to go down this path and also shares her experiences and what she has learned that has helped her along her journey leading to her advocating for body positivity, self love and compassion to reduce stigma around often taboo topics. Connect LIVE 2022 was an in-person community led event, fea...
MRKH and Mental Health - Susan
Переглядів 792 роки тому
Susan shares her experiences of the mental health toll of MRKH and the tools she has learnt through her research and as a Clinical Psychologist to help support both herself and others. Connect LIVE 2022 was an in-person community led event, featuring speakers of MRKH lived experiences, international presentations, and panel discussions in London, UK. Inspired by our MRKH Connect with Friends ev...
MRKH and Intimacy - Nikol
Переглядів 1192 роки тому
Nikol provides insights into how having MRKH is not a barrier to intimacy and pleasure. That intimacy and pleasure is more than just sex but about finding a connection with yourself, with others and understanding what makes you feel good, and importantly relaxed. Trigger warning for topics around sex and intimacy Connect LIVE 2022 was an in-person community led event, featuring speakers of MRKH...
Welcome and Introduction
Переглядів 562 роки тому
Charlie leads us through a presentation introducing Connect LIVE and the work of MRKH Connect. Joined by Ally, they present the Global MRKH film, a powerful snapshot of our global community and the courage and strength that helps enact change and introduce Ally’s book where Ally shares an extract from her Preface before we head into the rest of the program. Connect LIVE 2022 was an in-person co...
MRKH and Infertility - Charlie
Переглядів 752 роки тому
Charlie shares her personal experiences of MRKH and Infertility and how the topic of infertility can be a complex one and where the boundaries are not just black and white and how the "options" we have to have children, and how we perceive those, may also change over time remembering happiness is always something worth striving for. Connect LIVE 2022 was an in-person community led event, featur...
MRKH and Genetics - Amy
Переглядів 1872 роки тому
Dr Amy Lossie of Beautiful You MRKH shares her perspective of the role of genetics in MRKH. Watch this interesting presentation on what she has found, learned and the complexity of MRKH which still means this process is ongoing. We are so honoured she could speak at our event. Connect LIVE 2022 was an in-person community led event, featuring speakers of MRKH lived experiences, international pre...
Stacey - A letter to the baby I couldn't carry
Переглядів 263 роки тому
Stacey - A letter to the baby I couldn't carry
Charlie's story - My childless life and why it's ok
Переглядів 1553 роки тому
Charlie's story - My childless life and why it's ok
NIAW - Lauren's Poem "The secret inside"
Переглядів 773 роки тому
NIAW - Lauren's Poem "The secret inside"
Emily - When motherhood feels impossible
Переглядів 883 роки тому
Emily - When motherhood feels impossible
My name Ayan am living egypt i have MRKH syndrome please help me i scape my country descarminaion i enter egypt i need to make surgery please help me i don't have money
❤ i love you
Aww I ❤ you too!
Truly inspirational! It is very brave of you to share your story. Thanks to you, more women, particularly from the Black and South Asian communities, will have the courage to come forward, share their journey, and get the support they need. Keep doing the amazing work you're doing, Aysha!
Aww thank you so much for your heart-felt comment. It lit my face up with smile! 😊Yes 💯 % we need to hear from different cultures and support each other. No one should go through this journey alone! ❤
I just found out my daughter is diagnosed as mrkh and it’s a bit difficult to accept it..this video is helpful but i have tones of more questions to ask 😔
Thank you for your message please reach out to us and we would be very happy to help answer or direct you to more information
Its clearly not genetic my mom has six siblings 3 of which are woman and three men. All of my cousins are normal. My dad has two sisters and all my cousins by both of them have normal children. I cant prove it but I believe either my mom smoking Marlboros, eating McDonald's everyday, or the government is steralizing. It never even crossed my mind as genetic because its not present in anyone but me and I have a huge family. All of my mammals sisters all have kids and there kids have kids too. I am utterly alone in this.
Thanks for your comment, the genes are affected which is what leads to MRKH in 1 in 5000 (approx cases) meaning it would be more unusual if it was present in other members of your family. It certainly isn't related to diet or smoking based on medical papers written about MRKH. Happy to share some links if you want to learn more :)
As a Muslim girl, I watch this video with my tear. Sometimes it is really hard to deal with but as a Muslim i know that this world is just for test and it is for a really really short time. I pray so much for strength and patience. Also girls you are just amazing! You can't guess how much helpful you are. In this night(miraj) i will pray for all of us but especially for you. Allah bless you. I have so much things to say i will right here later inshAllah. i hope so :')
Thank you so much for your reply and your lovely comments. We are so happy that this touched you and that you find our posts helpful! xx
Área una chica muy Linda que asó no te afecte
Charlie❣️Do you know who I am? I'm Takashi, who sometimes talks with you on Instagram DM ^ ^ I was surprised that the number of subscribers to your channel is still small ^ ^❣️I was frantically enlarging your small image to see it ^ ^ Your long hair is lovely ^^Do you still wish to have children from the man you love? I've given up on marriage, so I don't think I want children. I believe that people with MRKH, Tanner Syndrome, and other DSDs are deeply concerned and distressed about their physical condition. Will you talk to me on Instagram again? See you later!❤❤❤❤❤❤❤❤❤❤❤
Charlie❣️I saw and heard your video and voice for the first time! do you know who i am My name is Takashi. I occasionally write comments for you on Instagram. I think all MRKH women have a delicate beauty ^^ You shine even without the organs that a woman should have ♪ I want to talk to you once ^^❤❤❤❤❤😊😊
So true and so emotional...to put words on many silence words is surly a blessing!!
After a long time I will comment. I made a grave mistake. I thought MRKH women had no uterus at all, but I learned from a tweet on Twitter that I was wrong. It was written that the growth is incomplete but the uterus is there. I apologize profusely.
p̴r̴o̴m̴o̴s̴m̴ 😴
Emily, I have not observed Morphine yet. Are you in Lichfield, UK? Your facial look has changed now. Invent and learn more. All the best !
Hi Emily where is your black dress from as well as your duvet cover?
Pinned me
This is rousing speech. Thanks god, you cured from such a painful surgery. I will make prayer for your good health.
I'm serious person I'm not looking for a perfect girl, I WANT to care and love her so much
shame .. stop drooling
@@trooperchick3610 OKAY baby I love you. Don't get mad at me. I'm doing good
In short I will tell you, this world is very huge. We are on Earth but distance is very large. I am in India.
lol stop
I can't translate English so I'm using a translator to write text to you ^ _ ^ I've written text to you in the past. I have so many DSDs that I don't understand them all ^ _ ^ But looking at your gentle face I thought you weren't destined to have no children. Uterus transplantation is now possible with the ovaries. You should not despair and hunt yourself down! I also have a male reproductive disorder and can't have my own child, but you shouldn't despair. From Takashi.
Lemon juice mix with water, salt & sugar will help to re-create your tissue. Do you not feel like, you did mistake by making this video? Is it your thrilling experience? They give injection to you.
Charlie! Nice to meet you! I am Japanese and live in Japan. I use a translator to write a message to you. I'm a man ☺️ You seem to have chosen a childless life with a boyfriend ☺️ I can't translate English very well so I'm sorry if I'm wrong. I know a little about DSDs. MRKH is in that state too ☺️ I'm 62 years old and single, so I'd be happy if my beloved woman was by my side! I wish you happiness ☺️ Takashi.
Well said Claire
Thank you for this.
Meditation is so important so we can become more aware of our thoughts and feelings. Thank you for raising mental health awareness!
Tracey! I think all your childhood photos are cute and charming! I know your physical condition as Lokitansky Syndrome. I use a translator, so please forgive me for small spelling mistakes! I've never been married at the age of 61, so I don't have any children, so I don't mind if I don't have Tracey's womb and can't have children! There are many people in the world who are similar to me, so don't despair and be proactive with the man you love! Takashi.
Hi there! Thank you for your comment. Tracey doesn't have a womb she also has MRKH (or Rokitansky syndrome) she is sharing her experiences to help those newly diagnosed as we all know how hard that can be.
@@mrkhconnect6170 Thank you for your reply ❤️ Tell Tracey! That you are a good woman without a womb! And that your kindness will eventually be aimed at the baby you are in! Takashi.
Wooohhh I like this video, it's really helpful 🙏 thanks for sharing
u nailed it lauren
Didn't she! xx
Wow just admire you. You did amazing, I'm so proud of you Sis xx. 😍😍
It is wonderful isn't it!
Aww your kind words made me smile! Thank you so much! Sending you love dear sister! <3!
Nice to meet you! I know a little about disability rather than your illness. I don't think you have a uterus or cervix! I'm not good at listening to English and I can't hear it. I'm sorry if I made a mistake ☀️ Don't blame yourself as you are a woman no matter who you look at!
MRKH isn''t a disability or illness it is a condition we are born with. Thank you for all your comments on our posts we have some brave and courageous people in our community ! :)
@@mrkhconnect6170 I was fortunate to be born to a healthy man. However, I want to support you as I see your gentle and intelligent eyes and facial expressions while having your special conditions. Cheers to your rich motherhood 🍸️
@@mrkhconnect6170 I don't think there is any relationship between how the body works and motherhood ☺️ I don't think the absence of a uterus has any effect on motherhood 😃
It's really sad that this channel has only 18 subscribers.
It will grow we only just started it :)
There are many people who describe you in words, but definitely you are a woman ☀️
Does MRKH mean Lokitansky Syndrome? Is it a disorder that has no uterus or no cervix? I can't understand English without using a translator, so I'd appreciate it if you could add Japanese subtitles.
Thank you for your comment. MRKH is also known as Rokitansky syndrome yes and you are right this does lead to the absence of a uterus (or an underdeveloped uterus) and no cervix. It is hard for us to provide translations in different languages I am afraid but please don't hesitate to reach out to us and we can help provide any more information for you. Thank you for following us x
@@mrkhconnect6170 I didn't know anything until I was followed by my DSDs account on Twitter. I also learned about Turner Syndrome, AIS women and hypospadias! You all have a wonderful female heart 😃 I don't think it's Androgain or chromosomes to determine gender ☺️ If you love a man you just don't have a womb and you have to be loved by the other person Please don't think ☺️ Takashi.
@@mrkhconnect6170 Not all men want their marriage partners to have their own children ☺️ I feel happy just to have a woman who loves me 😄
@@mrkhconnect6170 I don't know because I have never had a physical relationship with a woman, but why can't I have sex without a cervix? I use a translator so the translation may not be correct, but please forgive me 😃
If someone is interest in doing video calls to get to know each other and talk about more intimate things like how do you struggle with sexuality, religion and masturbations for example, solitude, meeting people ,, etc lm really interesting in those topics... but I’m 43 and the syndrome was a secret in my family nobody’s ever spoke to me about nothing. ... I hadn’t have the surgery so ... 🤷♀️I’m from Argentina 🇦🇷 so ... just let Melanie and let’s talk about happens when we turn the camera off. You’re super brave to share your story sis ! Hope to get to know you better and help each other 🥰🥰🥰🥰
We also run regular online zoom chats as well, Do look out for our announcements on our website and social media. The next one is 25th April :). We love to help connect people.
I love this thankyiu so much
Very inspirational and I love the confidence and openness about topics that aren't talked about much in our communities! We need more people to raise awareness! Love what you guys are doing! Keep it up!
Aww thank you so much dear sister Amal! Thank you so much for your love, support and duas always! I really appreciate it immensely! Jazakullah Khrian dear sister! <3
SubhanAllah sis I really admire your strength and your courage Masha'Allah. May Allah bless you and make it easy for you ameen xxx
Aww you honestly say the sweetest things sister! Jazakullah khrian and Ameen to your lovely dua and remarks❤🤲🏻.
I liked this so much. I have been trying to look for a vid like yours that really informs the stuff in this vid! 👍 👌Your breakdown actually is similar to the channel of Dr. Ethan. Ethan's demonstrations are helpful and I learned a lot for my studies. He is an educational medical student in Europe and he talks about diseases and wellness! Go check out his page out and give the med student a like here! 👉 #DrEthanOnUA-cam