Our July 2018  #FibroidsChat was with Jenny Rosenberg, the Executive Director of CARE About Fibroids.

CARE About Fibroids is a Washington, DC-based nonprofit whose mission is to elevate uterine fibroids as a women’s health issue and drive change. Bringing together many of the nation’s most respected women’s health advocacy and policy-focused organizations to advance solutions, CARE About Fibroids is a catalyst for increased awareness, research and education about uterine fibroids, leading to earlier diagnosis and improved treatment.

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. Additionally, you can read the highlights of our previous #FibroidsChats here

Now, drum roll please…🙂. It’s my pleasure to introduce our guest Jenny Rosenberg, @CAREAbtFibroids

Welcome Jenny and thank you so much for taking part in this Twitter chat, it’s a pleasure to have you. Please can you tell our audience a bit about yourself #FibroidsChat (3/3)

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

You’re welcome! Our organization has been very much looking forward to this #FibroidsChat. We find these chats to be incredibly informative and engaging.

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Ok, we have a few people that have joined us. Hello all!

We’ll go ahead and get started with our first question: Jenny, what motivated you to move into your current role at CARE About Fibroids @CAREAbtFibroids #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

I have always been passionate about women’s health and women’s health care. (1/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Serving as Executive Director of CARE About Fibroids is an opportunity to help women in the U.S. – a majority of whom suffer from uterine fibroids but know very little about the condition and their treatment options. (2/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

This seems to be a global issue as we have found that in many countries despite how common fibroids are, there isn’t an awareness of what them and treatment options. #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

You’re absolutely right. That’s why organizations such as yours are so important to help educate and promote more awareness.

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

I totally agree it is global and therefore this chat is so important and connect globally will help raise the bring awareness.

— OH Services (@OHServices2018) July 25, 2018

Based on your experience so far, what have been most important lessons you have learnt about fibroids and their impact on women? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

I’d say the one of the most important lessons we’ve learned is that fibroids carry a significant emotional and economic toll in addition to the obvious physical symptoms. Too many women with severe symptoms often feel helpless and worry about potential health complications. (1/2)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

This. This right here, emotionally and mentally it is draining.

— Olliviette (@olliviette) July 25, 2018

Definitely true. As a society, we need to be pushing for more patient-centric care when it comes to fibroid treatment. #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Many other women who suffer delay their diagnosis and are resigned to tough it out. We need to do a better job of promoting more information awareness about treatment options and pushing back against stigma that might deter women from seeking treatment. (2/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Absolutely. We need to inform women with accurate information and empower them to talk to their health care professionals about treatment. And you’re not alone if you’re asking, “What Are Fibroids?” We have answers: https://t.co/lPknefmtWH #FibroidsChat https://t.co/oD5F09ETsp

— HealthyWomen.org (@HealthyWomen) July 25, 2018

Agreed! Informing women about #fibroids and all of their treatment options is so important. We hope you’ll also include uterine fibroid embolization (#UFE) on your treatment list. Here’s more about this minimally invasive option! #FibroidsChat https://t.co/9Tdo5JSv7E

— SocInterventionalRad (@SIRspecialists) July 25, 2018

Yes and tough it out is the key word as then woman stop speaking about it and just go on struggling alone thinking its normal or okay. They are not alone and they should know there is help and support.

— OH Services (@OHServices2018) July 25, 2018

Absolutely agree! Women need to know they’re not alone–AND health care professionals cannot brush off their pain or experiences. #FibroidsChat

— HealthyWomen.org (@HealthyWomen) July 25, 2018

We’ll move on to our next question for Jenny: Can you tell us about the work that @CAREAbtFibroids does? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Right now, we are working to mobilize a broad spectrum of women’s health advocates to build greater awareness of uterine fibroids. This work includes the establishment of our steering committee, which you can read more about here: https://t.co/UFc3VmxyHF (1/3)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Are you members mostly America-based organisations? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Yes, given that we’re a relatively new organization, we are focusing on building our membership domestically.

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

We are also working to establish a broad-based membership of stakeholder organizations that can help us advance increased awareness, research and education about uterine fibroids. You can read more about some of these stakeholder organizations here: https://t.co/XdQdZYMYGa (2/3)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Additionally, we are working to build our patient network. We just launched a call for first-hand stories from patients who have experienced symptomatic uterine fibroids. https://t.co/tsmT6QiK2a (3/3)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Great to hear of all that you’re doing. This is really interesting.

I think one area that you’re exploring is research into fibroids. Research is such a key area and we wanted to get your thoughts on what the priorities should be for research into fibroids? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

First and foremost there needs to be an increased investment in overall research. We need to have an abundance of information into new treatments and mechanisms for earlier diagnosis. (1/4) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

We are currently developing a white paper on uterine fibroids that seeks to answer some of the common questions about the disease (2/4) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

These questions include: When is the right time to see the doctor? How does a patient choose if, when, and how to treat symptomatic fibroids? How do women and their families deal with the physical and emotional toll of fibroids? (3/4)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

We believe that by asking and answering questions such as these, we can do better for women and their families by raising more awareness of this condition. (4/4) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Yeah I personally find it frustrating that the cause of #fibroids is not known and why it affects black women so…where that research 😑📝🔬

— Olliviette (@olliviette) July 25, 2018

Yes, there are still a lot of unknowns when it comes to #fibroids and the need to push for more research. Fibroids are more common in black women and it’s thought to be due to a combination of genetics and lifestyle factors #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Them peas and rice days coming to haunt me. Lawd. #fibroidschat #fixit #imanewcreation

— Olliviette (@olliviette) July 25, 2018

Lol but the good thing is that you are changing it now. We did not know then what we know now so improvement is coming #fibroidchat

— OH Services (@OHServices2018) July 25, 2018

Thanks @OHServices2018 nearly missed the #Fibroidschat @CAREAbtFibroids @lakehealthwell @olliviette It’s great to see more #fibroid orgs Internationally

— Fibroid Network UK (@fibroidsupport) July 25, 2018

From your experience, so far, what are the biggest challenges that women, in the US, with fibroids face? #fibroidschat @CAREAbtFibroids

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Despite their prevalence, there is a considerable amount of misinformation about fibroid symptoms and treatments. This prompts women to forgo or delay treatment, causing more long-term suffering and increased treatment cost. We’ve got to push back against this (1/2) #fibroidschat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

and ensure that women who suffer have an abundance of information about symptoms, treatment options, etc. (2/2)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

.@CAREAbtFibroids What do you think needs to be done to address these challenges (by doctors, the Government, charities etc)? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

It’s important for us to break down barriers to access for women’s health care, and promote legitimate information about symptoms, causes, and treatment options for uterine fibroids. (1/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Our governments, physicians, groups like ours, etc. must emphasize that there is no one-size-fits all treatment. We must work to promote patient-centric treatments that work best for the individual patient. (2/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

.@CAREAbtFibroids What has been the most surprising thing you have learnt since working on fibroids? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

How many women have suffered from uterine fibroids and that if an organization like CARE About Fibroids had existed years ago many women would not be in the dark about this condition. #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Y’all keep working so it can get better. That was the past, only thing to do is help illuminate women and fam in the future. 👊🏾

— Olliviette (@olliviette) July 25, 2018

@CAREAbtFibroids To date, what has been your proudest moment with regards to CARE About Fibroids’ achievements? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

I would say hearing from so many women who have experienced symptomatic fibroids that there is a need for our organization and that by raising awareness of uterine fibroids (1/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

and educating about the condition plus the options women have for treatment we are going to make a difference in the lives of women and their loved ones for the better. (2/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Wow, time is really flying! We’re coming towards the end of our #fibroidschat. If you have any questions for Jenny Rosenberg, the Executive Director of @CAREAbtFibroids, please do tweet them to us.

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Just keep up the work Jenny #fibroidschat

— Olliviette (@olliviette) July 25, 2018

.@CAREAbtFibroids What tips/advice would you give to women living with fibroids? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

I would say three things. 1 – Know that you aren’t alone 2 – Don’t delay your visit to the doctor or OBGYN and 3 – Choose the treatment that works best for your individual needs. #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Our final question before we start wrapping up: Jenny, is there anything that you would like to see happen globally to improve the situation for women? Any global approaches that you think could be useful? @CAREAbtFibroids #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

First and foremost we need more awareness about symptoms and treatment of uterine fibroids in order to push back the stigma that associates periods with embarrassment and disgust. (1/2) #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

We also need well-funded research into treatment options so that we can continue to develop more options for women with fibroids. (2/2)

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Again, there is no one-size fits all treatment to symptomatic fibroids. But the more treatment options we have and the more women and their providers know about them, the more we can begin to address the individual needs of women who suffer. #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

If anyone would like to find out more about @CAREAbtFIbroids, contact your organisation or get involved in your work, how can they do this? #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Please visit our website https://t.co/yO9sMD5u49. We have curated a lot of information that we hope can serve as a useful tool for women seeking to learn more about fibroids. You can also contact us here: https://t.co/C6RAeRVGIW

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Great, thank you for sharing. We’ll make sure we point people in your direction. Thank you so much for joining us today, it has been really informative. We wish you every success with all the work that you’re doing and look forward to seeing your white paper #fibroidschat

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Thank you so much! We are honored to have been your guest this month. Looking forward to speaking with you again soon! #FibroidsChat

— CAREAboutFibroids (@CAREAbtFibroids) July 25, 2018

Thank u everyone for joining our #FibroidsChat today. We’ll be taking a break for the #summer and hope to back with another #FibroidsChat in September. We hope you found this chat useful and if you have any further questions, please do email us an info@lakehealthandwellebing.com

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Many thanks for this #FibroidsChat @lakehealthwell A pleasure as always. Have a Great Summer #July #FibroidsAwarenessMonth

— Fibroid Network UK (@fibroidsupport) July 25, 2018

For those of you who joined our #fibroidschat today and are looking for more support, @OHServices2018 are launching their 4-week online course on the emotional impact of fibroids. You can find out more here: https://t.co/Xcyq5ilDRK@olliviette, @The1980rules, @NoToFibroids

— Lake Health and Wellbeing (@lakehealthwell) July 25, 2018

Sorry missed the chat during the course of work…thank you for helping raise Awareness about #fibroids and being an #advocate .#FibroidsChat #FibroidAwarenessMonth

— Keith Pereira MD, #Vascular_Irad (@keithppereira) July 25, 2018

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