BlogFibroids Twitter Chats
On 21st June we were delighted to host a Fibroids Twitter Chat featuring Angèle Mbarga.
Angèle Mbarga is the Founder of Fibrome Info France which she established in 2011 to provide a place of healing dedicated to women suffering from fibroids. Angèle’s personal experience with fibroids motivated her to start Fibrome Info France to fill the gaps in support that she noticed when she was first diagnosed.
If you missed this Twitter chat you can read through the highlights of our conversation below and if you have any questions or comments, please leave them in the comments section at the bottom of this page or send us an email, we’d love to hear from you.
Hello Twitter family, it’s our pleasure to welcome you to another one of our #fibroids #TwitterChats.
Today, we’re absolutely delighted to have as a guest Angèle Mbarga, the founder of @FibromeInfoFr (1/3) #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Hi everybody, i’m Angèle Mbarga, founder and CEO of Fibrome Info France, an organization in charge of women suffering from uterine fibroids in France. 1/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Fibrome Info France has a three-fold missions namely: to inform and alert women about uterine fibroids, to assist those who have already developed fibroids, and the last one but not the least, the enhancement of fibroids’ cares in France. 2/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
I’m delighted to share my experience with all of you, and I want to thank Abi, the founder of Lake Health & Wellbeing, for the wonderful idea she had to invite me to this fibroids chat. 3/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Q1: Angele, you have an incredible bio, so let’s start at the beginning; you have had personal experience with #fibroids. Can you tell us a bit about your experience? @FibromeInfoFr #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
My fibroids were diagnosed in February 2008 further to pelvic unbearable and sharp pains. The pelvic ultrasound realized in emergency by doctors unveiled that my pains are due to a necrobiosis caused by my fibroids. And that’s how it all started! 1/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Necrobiosis is nothing more than the infarction of fibroids. It is the severe form of complication of fibroids which may require emergency surgery, especially when the necrobiosis is over supplied with blood. 2/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
We’re so sorry to hear of the experience that you had with #fibroids and hope that you recovered well and are ok now. It must have been significant challenge. #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Q2. What was the most challenging aspect of having fibroids? #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Yes it was a big challenge! The first time the doctor told me I have fibroids, I was dumbfounded! My gynecologist of that time never alerted me about fibroids. I barely knew what they were as I had some relatives who had surgery because of fibroids. 1/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
My ordeal lasted almost 2 years during which untimely bleedings and haemorrhages were my daily reality. Their impacts on my day-to-day life especially on my social life and my relationship were disastrous. This latter were going downhill fast. 2/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
I was operated by laparotomy in January 2010, after several months of medical wandering. Now i’m doing well. 3/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Q3: What would you say that you have learnt from your experience? #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Further to my experience I am now certain that women have to act for their own health in order not to just undergo medical decisions that are proposed to us, but also to change the care of uterine fibroids. 1/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Just like all women fights, such as the right to contraception or the right to abortion, women with fibroids must go down in the arena to move the lines. We must be carriers of changes if we want doctors rethink of the care of fibroids. 2/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Q4: You founded Fibrome Info France in 2011, can you tell us what motivated you start your organisation? @FibromeInfoFr #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
I created Fibrome Info France to avoid to women suffering from fibroids to experience what I been through. I remember that after hearing the doctor diagnostic my first action was to rush on internet looking for an organization dedicated to fibroid. 1/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
I wanted to talk to women suffering from fibroids. I needed to talk about it, to be listened. My researches were vain. There was no such as organization in France that could help me. 2/3 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Our organization receive very often women who have been told by their general practitioner or their gynecologist that having fibroids is not a big deal! #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
This is very true. So far I have found that medics tend to take a blasè approach to #fibroid care as they are non-cancerous. So I think as women we need to do more to highlight the struggles faced and advocate for further advancement of care #FibroidsChat
— JourneyToBeatFibroidsNaturally (@NoToFibroids) June 21, 2018
Yes, we hear this a lot in the UK and #Caribbean. Fibroids seem to be trivialised a lot!, which is not helpful to women who are going through a challenging time. #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Q6: Can you tell us about the services Fibrome Info France provides to women who have been affected by fibroids? #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Fibrome Info France works to improve the care of uterine fibroids and to change people opinion about fibroids in France. Before the creation of the organization, women suffering from fibroids were left on their own. #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Our organization filled the gape in terms of information for women about this disease, through awareness campaigns and the edition of information leaflets made available to women in hospitals and waiting rooms of gynecologists. #FibroidsChat pic.twitter.com/XfbgJEXVkF
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Fibrome Info France offers women a personalized support. We act through individual interviews, support groups and any other means that can help to reacting out a maximum women. 1/4 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Uterus being the neuralgic organ of women, we need to consider its symbolism meaning when talking about care and healing of disease related to this organ. 2/4
#FibroidsChat— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Fibrome Info France has created a specific support group for women experiencing troubles in having a child or women who have had miscarriages. We consider that their cases are so sensitive that they need specific support. 4/4 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
This is such a useful service to offer, as there is a lack of support for women in this situation #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Yes! Some of those women need to mourn their missing babies and sometimes to definitively give up on their desire of motherhood. I personally work with those members on the matter of self-esteem and self-confidence, so that they don’t feel responsible/guilty of their situation
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Even though vital prognosis of women with fibroids is rarely life threatening, the fact remains that many affected women are devastated. There are significant impacts of uterine fibroid on couples, social and professional life.
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Q7. We can see you have several achievements such as releasing an awareness video and supportive guide. Can you tell us more about these? @FibromeInfoFr #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Our first awareness video and launched in June 2012 on social media the first campaign on uterine fibroid. We developed and published in January 2013 our first information leaflet, for the purposes of our second awareness campaign. 1/2 #FibroidsChat pic.twitter.com/y7GpfT24Es
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
In January 2015, with the support of the Ministry of Women’s Rights, we worked in partnership with specialized doctors to develop an information and support guide for patients. Made up of a dozen practical sheets, this guide can be used as a roadmap for women. 2/2 pic.twitter.com/D3CCNJBf6f
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
It’s good that you were able to partner with the Ministry of Women’s Rights on this project as well as doctors, nice that you all come together on this.
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Yes it important for to partner with doctors & hospitals. In Paris area and in various other regions: in June 2015, multi-disciplinary consultations dedicated to the diagnosis and management of fibroids, were open to reduce the medical wandering of women. #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Q7 and Q8 Time is against us, so I will ask two questions at once 🙂
We’ve talked quite a bit about the challenges, are there any other challenges that women in #France face and what do you think the Government should do to address these? #Fibroidschat @FibromeInfoFr
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
The trivialization of uterine fibroids and the denial of the pains of women suffering from fibroids are undoubtedly the most common challenges to be faced. 1/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Another one is the systematization of surgical treatments and the propensity to offer hysterectomy as the only therapeutic solution: uterine fibroids are the leading cause of uterine ablation in France: more than 75,000 surgeries are performed each year. 2/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
One of the major changes in the management of uterine fibroids would be, the implementation of awareness-raising and primary prevention. 1/2 #fIBROIDScHAT
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Particularly through national information campaigns which would allow women to be informed as soon as possible about symptoms & complications of uterine fibroids, especially in terms of fertility. 2/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Our last question is about your anniversary! a.The 30th June is Fibrome Info France’s 7-year anniversary – congratulations! How will you be celebrating this great milestone? @FibromeInfoFr #fibroidschat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Several highlights are planned to mark this event; in particular an open day under the sign of the sharing of experiences. The celebration of the future mothers group is one of the highlights of the festivities. 1/2 #FibroidsChat pic.twitter.com/rAlGUDIkhy
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Several members of this group will testify to break the law of silence and the taboos around fibroids. And of course the highlight of this event will be the toast that will be proposed to the health of women who suffer from fibroids. 2/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Congratulations and we wish you all the best with this event. What has been the proudest moment of your first 7 years and what are you major plans for the next 7 years? #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
It’s a very difficult question as I am proud of all the achievements of the organization. I am very proud of the first info leaflet published in 2012 and shared in the hospitals. I am equally proud of the guide of information and support published in January 2015. #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Uterine fibroid affects 30% to 60% of the women of childbearing age, including 60% of Afro-Caribbean native. There is an urgent need to open an antenna of Fibrome Info France in Martinique or in Guadeloupe. 2/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Next year, we plan to carry out a caravan for raising awareness, in order to meet women living in several regions of France. Besides big cities, West French Indies will also be part of our caravan. 1/2 #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Thank you so much Angele for joining us for today’s #FibroidsChat. It has been really great learning more about you and all the great work you’ve been doing over the past 7 years. (1/3) #fibroidschat @FibromeInfoFr
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
We wish you continued success with your organisation and are impressed by all the work you have conducted and the difference you have made in women’s lives. (2/3) #fbroidschat @FibromeInfoFr
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Thank you to you Abi, its was a pleasure for me! #FibroidsChat
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Thank you so much. We need a significatice change of management of fibroids. It’s important to women to know that the evolution and complications of fibroids vary from a woman to another, depending on the location, size and number. 1/2 #FIBROIDSCHAT
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
If women would like to find out more about Fibrome Info France where can they get more information (3/3) #fibroidschat @FibromeInfoFr
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
If you need further information, I kindly invite you to visit our web: https://t.co/pYydcFttV1 Or our facebook page https://t.co/xXVJ1dHl08
#fibroidsChat— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Thank you to everyone who joined us for this #FibroidsChat. We hope you found it useful and it gave you some insight into the work of @FibromeInfoFr and the situation in #France.
Find out more about Fibrome Infor France on their website: https://t.co/XCMre5oVdk #FibroidsCHa
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
Or you can visit their Facebook page here: https://t.co/2FOuGZc1w6 #FibroidsChat
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
We’ll see you all in July for another #FibroidsChat. We’ll be chatting to @CAREAbtFibroids on 25th July. More details to follow.
Have a good afternoon/evening!
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
I’d like to share with all of you our awareness video pic.twitter.com/jCRtWPz7dh
— Fibrome Info France (@FibromeInfoFr) June 21, 2018
Thank you to all who joined us earlier today during our #FibroidsChat. If you missed any of our previous chats you can read through the highlights of all of them here- https://t.co/N0nHIerZz3
Our past guests included @eatlovemove, @KandiceBryan, @selfcareandfood, @OHServices2018 pic.twitter.com/k2d6PAZgKa
— Lake Health and Wellbeing (@lakehealthwell) June 21, 2018
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