For Immediate Release

24th June 2019

Organisations from the Caribbean, US, UK and France have joined forces to launch a global campaign calling for a greater focus on fibroids.

The campaign highlights the need for a global change where all stakeholders (healthcare professionals, women and their families) are better informed about fibroids so they are empowered to take action to improve the health and wellbeing of the many women affected by this condition.

Specifically, organisers are calling for a greater awareness of:

• The symptoms of fibroids to facilitate an early and accurate diagnosis;
• All the treatment options available so that women can make an informed decision about the treatment that best suits their situation; and
• What actions women with fibroids can take to improve both their physical, mental and spiritual wellbeing

Fibroids are non-cancerous growths that develop in or on the outer surface of the womb affecting an estimated 171 million women worldwide in 2013 and, in 2010, fibroids were estimated to cost the health sector in Europe €163 Million.^1,2

Despite being very common it has been shown that there is a low level of awareness of fibroids and women don’t feel equipped to make an informed decision about their treatment^3,6.

Studies have also shown that fibroids are more common in black women with an estimated 80% of black women being affected⁴. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger, multiple fibroids, and tend to develop more severe symptoms⁵.  The reason for this is unknown, but it is thought to be a combination of genetic, environmental and lifestyle factors. Compounded experiences of racism and internalised racism are also seen to be contributory factors.

Fibroids tend to be overlooked because they are not life-threatening, but fibroids can significantly affect a woman’s quality of life leading to both physical and psychosocial effects.  It’s important that a greater focus is placed on fibroids to ensure that more research is conducted to fully understand this important women’s health issue, and to ensure that more support and information is available that empowers all women with fibroids.

Julia Mandeville, Public Health and Advocacy Manager, Barbados Association of Endometriosis and P.C.O.S explained that:

“Women’s health has not received the level of attention warranted. We stand now, as a collective, understanding that the gaps in women’s health care can lead to significant public health problems if left unaddressed. One such problem is the lack of awareness and education surrounding menstruation and menstrual health disorders which research has shown, negatively impacts the psychological, physical, social and financial wellbeing of those diagnosed with these conditions. Thus, it is critical that women and girls are equipped with relevant, evidence-based information to become more competent and confident advocates of their health, and obtain the resources and treatments needed to improve their health-related quality of life.”

Abi Begho, Founder of Lake Health and Wellbeing, based in St Kitts and Nevis said:

 “For too long women with fibroids have been neglected and it’s time for society to step up and address this. We need to ensure that women with fibroids have easy access to accurate information, appropriate support and a high standard of care to improve their wellbeing.”

Whilst Dr Sydney Dillard, Associate Professor at Du Paul University stated:

“Throughout the world fibroids tend to be trivialised without a real appreciation for the way fibroids can impact a women’s quality of life. The impact is wide-reaching affecting women’s physical health, mental wellbeing, relationships and creating challenges in the work environment. By everyone being better informed we can ensure early diagnosis; prompt, appropriate treatment and the chance to adequately address the psychosocial impact of fibroids.”

The organisers behind this campaign are encouraging women to access more information by visiting the campaign page and to contact the organisations in their region if they would like further support.

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Notes to Editors

This is a joint campaign of the following organisations who raise awareness, provide information and support to those who have been affected by fibroids and advocate on behalf of women to improve the quality of care.

Barbados Association of Endometriosis and PCOS – The Barbados Association of Endometriosis and PCOS is a registered non-profit organization in Barbados which seeks to educate citizens and advocate for those who have Endometriosis, Polycystic Ovarian Syndrome and other pelvic conditions (including Uterine Fibroids).

Website: http://endoandpcosbb.com/

Email: julia.mandeville@endoandpcosbb.com

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CARE About Fibroids – CARE About Fibroids is a Washington, DC-based non-profit 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.

Website: http://www.careaboutfibroids.org

Contact: http://www.careaboutfibroids.org/contact.html

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Fibroid Awareness Trinidad and Tobago – is a registered NGO based in Trinidad and Tobago that focuses on educating and empowering girls and women through advocacy and driving awareness on fibroids and other issues of the uterus.

Website: https://www.ttconfidenceproject.org/

Email address: factt2014@gmail.com

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Fibrome Info France – Fibrome Info France is the first patient association in France that informs, educates and supports women with uterine fibroids. The association was born out of the lack of information and awareness on this disease which affects 30 to 60% of women of childbearing age and is the main cause of removal of the uterus in France. Fibrome Info France has a triple mission:

• Information and awareness on uterine fibroids
• The support of women with fibroids in the care process
• The implementation of actions to improve the management of fibroids

Website http://fibrome-info-france.org/

Email address: contact@fibrome-info-france.org

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KMT Rising – KMT Rising is a UK-based organisation that is dedicated to the optimum health and wellness of all women around the globe; ensuring that their personal, emotional and health-related needs are catered for through a range of bespoke holistic packages. They also provide very unique Fibroid products on sale internationally:

• Fibroid Assessment Check List
• So you have Fibroids – Next steps guide
• Get yourself checked for Fibroids guide

Website: https://www.kmtrising.com/

Email address: kmtrisingltd@gmail.com

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Lake Health and Wellbeing – Lake Health and Wellbeing is based in St Kitts and Nevis and aims to improve the health and wellbeing of their local, regional and online community through health promotion, public health interventions, conducting research and offering information and support to those with concerns about their health. They have a fibroids information and support program which consists of events, publications, campaigns and more.

Website: www.lakehealthandwellbeing.com

Email address:  info@lakehealthandwellbeing.com

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Noire Wellness – Noire Wellness is a UK-based organisation that takes a public health and wellbeing approach to reducing health inequalities through culturally sensitive interventions

Website: www.noirewellness.com

Email address: info@noirewellness.com

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OH Counselling Services – OH Counselling Services is a UK-based organisation that provides one-to-one Counselling, EMDR Therapy, Group Therapies, Workshops and Seminars.   Their services are offered to adults, young people and all groups from different backgrounds and walks of life.

Website https://www.ohcounsellingservices.com

Email address: ohservices@counsellor.com

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The Fibroid Forum – The Fibroid Forum is UK-based and raises awareness, shares information, promotes women’s wellness and supports fibroid sufferers

Email address: thefibroidforum@gmail.com

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References

1. Theo, V., et al. (2015). Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 386 (9995), pp. 743-800
2. Hunt, P., Sathyanarayana, S., Fowler, P. and Trasande, L. (2016). Female Reproductive Disorders, Diseases, and Costs of Exposure to Endocrine Disrupting Chemicals in the European Union. The Journal of Clinical Endocrinology & Metabolism, 101(4), pp.1562-1570.
3. Lake Health and Wellbeing (formerly known as The Lake Foundation), (2014). Understanding the Needs of Women With Fibroids.
4. Wise, L. and Laughlin-Tommaso, S. (2016). Epidemiology of Uterine Fibroids. Clinical Obstetrics and Gynecology, 59(1), pp.2-24.
5. Radmila S., et al.  (2016).  Epidemiology of Uterine Myomas: A Review. Int J Fertil Steril, Volume 9 (4), pp. 424.
6. All-Party Parliamentary Group of Women’s Health, (2017). Informed Choice? Giving Women Control of Their Healthcare.

For Immediate Release

3rd September 2018

In April 2018 Tola Okogwu was featured in a BBC interview about the potential dangers of hair care products marketed at Black women. The interview went viral and was shared by thousands of women all over the world. Black women were rightly shocked and concerned and yet it did not cause much of a stir across mainstream media. This inspired her to join forces with Abi Begho and Sheila Marshall to create a documentary uncovering the truth behind the safety of hair products for Black women.

In a study, published in April 2018 by researchers from the Silent Spring Institute and Battelle Memorial Institute in the USA it was found that 80% of black hair products contain endocrine disrupting and asthma causing chemicals. Endocrine disrupting chemicals are of particular concern as some studies have linked these chemicals to hormone-related health conditions including, breast cancer and fibroids. But what does this research actually mean for Black women using these products daily? Should they be worried? Should they stop using these products?

Black women need to be empowered with clear, accurate, reliable information so that they can make informed decisions about the products that they choose to purchase. This is why the ‘My Haircare Nightmare’ documentary is so important. Tola, Abi and Sheila’s goal is to create a documentary that will provide some answers, stimulate discussion and question a culture that has created a market that perpetuates the myth that natural afro hair needs to be ‘tamed’ with product after product.

Their documentary will creatively explain the science behind the research and delve deeper into the societal and cultural pressures that lead black women to use these products. They will speak to real women and hear their hair stories.   The documentary will also provide expert advice and practical approaches to help Black women reduce their level of exposure to EDCs and asthma causing chemicals. They will speak to scientists, manufacturers, consumers, influencers, policy makers and more to gain a deeper understanding of the issue and what we should all be doing about it.

In order to make this documentary happen, the collective needs to raise over £80,000 and have launched a crowdfunding campaign to turn their vision into a reality.

https://igg.me/at/myhaircarenightmare

For interviews and more information

Ronke Lawal info@ariatupr.com

Notes to Editor

Tola is an author who holds a Bachelor’s degree in journalism and has written for several publications including Black Beauty and Hair Magazine and Metro UK.  An avid reader, Tola enjoys spending time with her family and friends around her home in Kent where she lives with her husband and daughters.

Abi Begho is the Founder of Lake Health and Wellbeing, an organisation which seeks to address the health inequalities that exist where the black community faces a number of health challenges. Abi is very passionate about giving back to her community and has been recognised for this work having received an award from the MGC GCC for her contribution to health and wellbeing and was nominated for an Active Citizen Award.

Sheila Marshall Following her MA in International Political Economy Sheila worked for 10 years across film and television. This includes working in development for Film4 and the UK Film Council. Sheila also produced “Outtakes US Presidents” for BBC, a comedy show about presidential gaffes. Since 2011 she has worked as an independent filmmaker on Right Between Your Ears and other projects, including a pilot magazine show “Living Resourcefully”.

For Immediate Release

2nd March 2018

Basseterre, St Kitts -This year the global theme for International Women’s Day on 8^th March is #PressForProgress and Noire Wellness and Lake Health and Wellbeing are calling for progress to be made to improve the experience of women with fibroids.

This initiative has been designed to raise awareness of key areas that need focus if there is to be equality in healthcare. Noire Wellness and Lake Health and Wellbeing are calling for:

• Breakthrough research into fibroids and ethnicity
• Patient insight on the impact of diet and exercise on fibroids
• A commitment to professional excellence when caring for women with a family history of fibroids and symptoms associated with fibroids
• Global and local support networks to ensure that women with fibroids never feel isolated
• Greater awareness of fibroids, its symptoms and impact on women’s lives, particularly the psycho-social impact.

Despite fibroids being very common a survey conducted in the UK by Lake Health and Wellbeing showed that there is a low level of awareness of fibroids and women don’t feel equipped to make an informed decision about their treatment¹. The survey revealed gaps in patient information on all aspects of fibroids and in the availability of peer support. Women also reported that fibroids affected their quality of life, affecting them both physically and emotionally.

Additionally, the UK’s All-Party Parliamentary Group on Women’s Health’s fibroids inquiry found that 43% of women were not satisfied with the information about their treatment choice and a third of women were not happy with their treatment². Furthermore 40% of women were not told about the short-term complications of their treatment and 50% were not told about the long-term complications.

Research has shown that fibroids are more common in black women with an estimated 50-80% of black women affected³. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger, multiple fibroids, and tend to develop more severe symptoms⁴.  The reason for this is unknown, but it is thought to be a combination of genetic, environmental and lifestyle factors.

The experience of women with fibroids reveals an inequality in healthcare that needs to be addressed.  Noire Wellness and Lake Health and Wellbeing believe that because fibroids are a women’s issue: it affects predominantly an ethnic minority group: and it is not life-threatening, it has been overlooked. But, many women are suffering, and something needs to be done to ensure that women receive the attention, support and quality of care they deserve.

Candice Bryan of Noire Wellness says:

“In order to truly provide a better experience for women living with fibroids, we must acknowledge that health inequalities continue to have a detrimental impact on the quality of life for black women living with fibroids across the globe.  It is time to collaborate and press for progress to provide solutions.”

Whilst Abi Begho from Lake Health and Wellbeing said:

“For too long women with fibroids have been neglected and it’s time for society to step up and address this inequality. We need to ensure that women, particularly black women, with fibroids have easy access to accurate, reliable information, appropriate support and a high standard of care to improve their wellbeing.”

The campaign will utilise social media to highlight what needs to be done to improve the experience of women with fibroids. The public can get involved by using the hashtag #PressForProgress in the week leading up to International Women’s Day to tell everyone of the change that needs to occur. To help, organisers have created a briefing which is available HERE.

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NOTES TO EDITORS

If you would like to write a feature or interview the team behind the campaign, please contact Abi Begho/Candice Bryan

For more information please contact Noire Wellness/Lake Health and Wellbeing  email candice@noirewellness.com and abi.begho@thelakefoundation.com .

The campaign launches on Thursday 1^st March 2018.

ABOUT NOIRE WELLNESS

Noire Wellness is a wellness brand established in 2016 that aims to improve the health and well-being of African and Caribbean communities living in the UK through providing a range of evolving and enriching wellness experiences, nurturing the provision of community wellness hubs, community consultancy and a growing wellness network of professionals.

Website: www.noirewellness.com

Facebook: @noirewellness

Twitter: @noirewellness

ABOUT LAKE HEALTH AND WELLBEING

Lake Health and Wellbeing is a Caribbean based organization that aims to improve the health and wellbeing of the black community through research, public health interventions, giving patients a voice and raising awareness.

Website: www.lakehealthandwellbeing.com

Facebook: @lakehealthwellbeing

Twitter:  @lakehealthwell

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References

1. Lake Health and Wellbeing (formerly known as The Lake Foundation), (2014). Understanding the Needs of Women With Fibroids.
2. All-Party Parliamentary Group of Women’s Health, (2017). Informed Choice? Giving Women Control of Their Healthcare.
3. Wise L.  and Laughlin-Tommaso S. (2016). Epidemiology of Uterine Fibroids: From Menarche to Menopause. Clin Obstet Gynecol, Volume 59(1), p 2.
4. Radmila S., et al.  (2016).  Epidemiology of Uterine Myomas: A Review. Int J Fertil Steril, Volume 9 (4), p 424.