In today’s blog we are delighted to hear from  Angèle Mbarga the founder of Fibrome Info France. Angèle shares her personal experience with fibroids, explains why she started Fibrome Info France, talks a bit about the situation in France and discusses the excellent work her organisation is doing to support women with fibroids. 

I had a surgery by laparotomy in 2010. In January 2011, when creating the association Fibrome Info France, I had no idea just how vast my job would be. The only thing I was sure of was the absolute need to have a place of healing dedicated to women suffering from uterine fibroids. This shelter will be their place where they would find a sympathetic ear and be able to share their own experience in a mutual aid environment. I had the vision of a modern sisterhood where every woman physically injured and hurt in her inner self, intimacy can henceforth stop and they would be able to talk openly, place a word on her pain without any judgement. My objective was to offer to women what had so badly missed in my time when I had to face fibroids for the very first time. Fibrome Info France is my plea a distress call of a woman wrecked by the violence of fibroids.

My fibroids were out of control, disabling and hemorrhagic.  My symptoms were blood clots with throbbing pelvic pains sometimes. Untimely and chaotic bleedings were my sad daily reality. My life was completely turned upside down. I had no menstrual cycle reference anymore. I had no life anyway. Fibroids were killing me softly. Periods and unusual bleeding got mixed up and caught me in an endless, disturbing and distorted cycle in a completely crazy pace. I was in hell! At office, in meetings, when hanging out with friends, in restaurants, in my own car or in common transportation, anywhere. Always this inopportune and incessant flow of blood gushing from me! There were no sanitary pads that could help me out with stopping this. Fibroids gave me no place for neither private nor professional life. It was like holding a time bomb in my womb with the difference that I had no idea when the explosion would happen.

While recovering from my surgery at hospital, I made a promise to myself to help those women with fibroids issues. They should not face the lack of information about this disease anymore. They should not go through the fibroids complications alone either. Once this idea sprouted in my mind I put all resources and forces I had to make it happen as quickly as possible. And in January 2011, Fibrome Info France was born. Our association assists through our support groups, every year we help over 1500 women to overcome their profound distress caused by this disease. Uterine fibroma is a disease that affects the woman in the depths of her intimacy and in some cases affects fertility. Its development and complications vary from one woman to another. But a widely spread cliché makes one  believe that fibroids are asymptomatic hence do not require any specific care. However, witnesses and S.O.S messages received by our association prove the need for information and support of women severely exposed to this disease which has a strong consequences and significant impacts on their intimacy, their professional and social life.

Uterine fibroma is the most frequent non-cancerous tumor that affects women in childbearing age. It represents also the first cause of uterus ablation in France, over 75000 every year. Physicians who are experienced in the care of this condition are of the opinion that African-Caribbean women develop fibroids at a younger age than the average and are prone to a higher rate of recurrence as well. The specific cases of young women who might likely relapse therefore exposed to repetitive surgeries raises the question of the preservation of the uterus and fertility. As the founder of Fibrome Info France, I assess on a daily basis women’s expectations with regards to this disease in order to have a good match with our actions towards them. The key challenge for our association is the information and awareness of women about the symptoms and complications of uterine fibroids in terms of basic prevention. We also provide tangible and lasting actions to improve the care of uterine fibroids and fight against its banalization.

In 2012, our first awareness video was released as well as our first information campaign. Both were financed by myself. In 2013, with the support of the then Ministry of Women’s Rights and the Regional Council of Ile-de-France, an informational leaflet was published. We also launched our second information campaign. In 2014, in partnership with doctors who support our action we developed and informative and supportive guide for patients and for the rest of the medical corps that are still underestimating the impacts of uterine fibroids as well. Around ten centres fully dedicated to diagnose and to the care of fibroids were opened in several hospitals in Paris and in other French provinces. All of our actions aim to respond to the need for information by women suffering from uterine fibroids and the imperative requirement to guide them on their therapeutic path. Our association will turn 7 on June 30!  To celebrate our achievements and alert the public about fibroids’ impacts we will hold an open house day in our premises. We invite anyone who is keen on acting for women’s health and rights to come and join us in our fight to improve the care of uterine fibroids, for the preservation of the uterus and the fertility of women suffering from fibroids.

Angèle MBARGA
Founder
Fibrome Info France

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We would like to thank Angèle Mbarga for sharing her inspirational story with us and applaud her for the fantastic work she has done in establishing Fibrome Info France and providing much-needed support to women in France who have been affected by fibroids. To find out more about  Fibrome Info France you can visit their website or connect with them on social media. 

Facebook: https://www.facebook.com/Fibrome-Info-France-233050816814726/

Twitter: https://twitter.com/fibromeinfofr 

Disclosure: this post contains an affiliate link. Find out more here

On 23^rd May, we attended the St Kitts Marriott Wellness Lunch. This was a lovely event, organised by the hotel for its staff, that aimed to promote healthy eating.

We were invited to have an information table to raise awareness of the work that we’re doing, and it really was a pleasure being at this event. We received a very warm welcome from everyone and had a steady stream of visitors to our information table who were genuinely interested in learning more about our projects and campaigns.

We had some great conversations about a number of health issues and got the opportunity to talk to attendees about the Healthy Caribbean Coalition’s Childhood Obesity Prevention Campaign. This was very well-received with many showing their support by signing the childhood obesity prevention petition which will be presented to Caribbean leaders at the CARICOM heads of governments conference in July. You can find out more about this campaign and sign the e-petition here

We were able to speak to women about our fibroids survey which aims to understand the experiences of women with fibroids so that we can determine if there is a need to develop an awareness and support programme here in St Kitts. From our conversations, we learnt that  many women have been affected by fibroids and we hope that we can, in the future, provide some form of help to those who need it.

Additionally, it was  nice meeting representatives from other organisations such as MASA Assist, Nagico, the National bank and credit union, all doing great work in some form or the other to support the wellbing of the public.

The lunch also gave us the opportunity to showcase our new ‘Be Healthy’ badges which we recently released to encourage a healthy lifestyle. Our badges as well as our key rings, t-shirts, tote bag and mug are available on our new online shop. Please do visit our shop to find out more about these products. You can visit our shop here.

This was a fun event, in the beautiful ball room of the Marriott with some lovely healthy food and great conversation – the perfect way to spend an afternoon! We’d like to say a big thank you to the organisers for inviting us to take part and to everyone who visited our table, we really appreciate all the support and kind words, and we look forward to attending future events at the Marriott.

Wednesday 23rd May, 2018

In today’s episode we focus on a study that we really, really love – the Harvard Adult Development Study, affectionately known as the Harvard Happiness Study.

You’ve probably received lots and lots of emails recently from companies big and small about GDPR (General Data Protection Regulation) which is the new EU data protection regulation that is coming into effect on 25^th May.

We’re no longer based in the EU but as people on our mailing list are, we’d like to let you know that if you’re on our mailing list, we would have asked you if you would like to be on our mailing list. This will have been done, most likely, at an event through our mailing list sign-up sheet or you would have signed up via our website.  We wouldn’t have added you randomly or if you simply emailed us to ask a question or requested information. We would have, and will, always ask(ed) you before we add(ed) you to our mailing list.

If you would no longer like to  be on our mailing list, you can unsubscribe at any time by clicking the unsubscribe button at the bottom of any edition of our newsletter.

Just a reminder that we:

• Only store your email address and name to send you our monthly newsletter as well as information about our events, giveaways and special announcements
• Won’t share your email address with anybody else, nor will we sell your email address to anyone

We hope you’ll continue to take this journey with us as we aim to improve the health and wellbeing of our community. We have some really interesting projects coming up, plus we’ve just opened up our Shop For Good where you can pick up some cute little items such as badges, key rings, t-shirts and tote bags with encouraging health messages. These items are perfect for health awareness events, giveaways and just to use, or wear, whilst you’re out and about so can you promote a healthy lifestyle.

We look forward to keeping in touch with you and thank you for being part of our mailing list family.

Hi folks, it’s Abi here and  I am back with another blog about my gardening experience and today I’d like to focus on my lovely peppers. To avoid repetition, I won’t go into the details of how I grew my peppers as I used the exact same technique I used when growing my tomatoes which you can read here.  What I thought I would do is focus on what I learnt from growing peppers, some of the challenges I encountered and how I overcame these.

Over the past 8 months or so I have been trying to grow four types of peppers – sweet peppers (or bell peppers), Scotch bonnets, Jalapeno peppers and Caribbean seasoning peppers (very similar to Scotch bonnets, but without the heat). Growing these peppers has been a huge challenge and I suppose I was lulled into a false sense of security as I started my gardening journey with tomatoes and okras which have been a breeze in comparison to peppers. If I had to score myself on my pepper assignment I would have to give myself a big fat D, I have failed miserably. I have only had some success (after several attempts) with sweet peppers and it looks like my third attempt at Scotch bonnets may (I don’t want to speak too soon) have produced some results.  Here are some of the challenges that I encountered that led me to give myself a big fat D.

Germination Was a Struggle

Whilst reading up on how to grow peppers, I did learn that germination of peppers does take a lot longer than tomatoes, up to a month. So, I was prepared for that. On my first attempt I planted 24 bell pepper seeds and 24 Scotch bonnet seeds in my seed starting tray (egg containers!), and patiently waited. I watered my soil regularly and with no sign of seedlings at 3 weeks, I wasn’t worried, I thought: ‘well, I have read that it can take up to a month so no problem.’ I waited. After a month, nothing happened, but I was still optimistic and continued to wait patiently. At 6 weeks, I started to get worried and then after two months, I gave up and started again. This time I added Jalapeno and Caribbean seasoning peppers to my pepper collection and sadly I got the same results (I gave up after 6 weeks). I was disappointed. I couldn’t figure out what was going wrong, so after 4 months and 2 attempts I took a trip down to the St Kitts Agricultural Department to get some advice. They were lovely, really helpful and friendly. They explained it could be the seeds and that peppers can be a bit “particular” and I should keep trying. They did say maybe I should cheat and buy some of their young pepper plants which were growing well in their nursery and so I did, I cheated. I bought a row of pepper plants and transplanted them into the garden, thinking perfect I have a head start, but I had challenges with their growth too – I don’t think peppers like me.

I still wanted to try to grow peppers from seed so I tried again and again with the seeds and  finally I was able to get my bell peppers and some hot peppers to germinate (yay!). These are going well, but slowly.

Peppers Are Slow

Having cheated and bought some seedlings and then finally had some success with my own seeds, I have quite a few pepper plants growing in my garden. Starting my gardening journey with tomatoes spoilt me because they grew relatively fast and I was expecting the same for my peppers, but pepper plants, or I should say my pepper plants, were sloooow! They really are taking their own time (but it may be my growing technique as I am a newbie!). If you’re going to grow peppers, you’ll need some patience.  As I sit here now I do have some really cute bell peppers developing and I have harvested about two (Very tasty!), but the Scotch bonnet is growing extremely slowly. So, with all the attempts and buying of seedlings it has taken me about 5 months to get my first bell pepper.

They Need Lots of Water

I live in the Caribbean and it has been really hot over the past few months and some of the challenges with the slow growth could be because they weren’t getting enough water (I am not sure).  I may have underestimated the amount of water that they needed. I am always worried about watering too much and my plants dying of root rot, so I suppose I am a little conservative when it comes to watering.  A couple of months ago, we had a guest over and they were looking at my garden and she felt I needed to give my plants a lot more water. So, she took over for a few days and soaked my peppers. I was really worried thinking they might drown. After about a week, my peppers seemed to perk up and looked a lot happier. Since then I can’t say they have grown any faster but they certainly look a lot healthier.

My Peppers Were Bugged!

Just as I was having some success with my bell peppers and feeling really good about them, I ventured out into the garden one morning and found that my largest pepper plant had lost ALL its leaves. I was shocked. How did that happen in just one night or morning? I looked around and spotted the culprit. A sneaky little green worm, which I later learned was a hornworm, ate my pepper leaves for breakfast. It was so greedy! It didn’t leave anything, all the leaves were gone. I was so upset and I thought that was it for that pepper plant. To my surprise and joy, about a week later my pepper plant started making a come-back, some new leaves were growing happily. I’ll see how it goes, I have my fingers crossed that this plant will survive.

Now, everyday I check my garden for hornworms and I have spotted a few which I have swiftly thrown over the wall!

It Has Been Fun

Although I haven’t been so lucky with my peppers it has been a lot of fun and a nice challenge. It has also been very rewarding too. When I noticed my first pepper, I was elated and when I picked my first pepper I was so proud of myself for persisting, it really was worth it. Although the bell pepper was a lot smaller than I expected, it tasted lovely.

A Great Learning Experience

I have learnt a lot about peppers over the past few months. Through my reading I have learnt that there are thousands of types of peppers (Wikipedia says about 50,000!!), which came as a real shock to me, I was only aware of five different types of peppers before I started looking into them. This means there is a type of pepper for every taste bud (sweet, hot, fruity, woody and smoky) and peppers come in a variety of shapes, sizes and colours (red, green, orange, yellow, purple and more).

When we look at the history of peppers, they are native to Mexico, Central America and South America. They made their way to Spain in 1493 and from there spread to other countries.

Peppers are also quite nutrient rich, their nutrient content is dependent on the type of pepper, but most peppers contain vitamin A, C, K, B6, dietary fibre, thiamine, niacin, folate, magnesium, copper, potassium and manganese.

I have also learnt some personal lessons about the importance of patience, persistence and hard work (they really gave me a good workout).

I’m really looking forward to picking more bell peppers and watching my Scotch bonnets develop. I’ll keep you posted.

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If you missed my previous blogs you can read them using the links below:

1. Improving Our Health and Wellbeing Through Gardening: An Introduction
2. Improving Our Health and Wellbeing Through Gardening: How I Got Started
3.  Improving Our Health and Wellbeing Through Gardening: Growing Tomatoes
4. Improving Our Health and Wellbeing Through Gardening: Growing Okra

Wednesday 16th May, 2018

We’ve had a  lot of interesting meetings, which we’re quite exited about so we thought we’d take a few minutes to update you on what we’ve been planning. 

We are absolutely delighted to have teamed up with Tola Okogwu, of My Long Hair Journey, to see what we can do to begin to address the issue of harmful chemicals in black hair products.

This issue has persisted for too long and we have to take a stand and do something about it. Before we do that, we’d like to hear from you and would be very grateful if you could complete the survey below, which should take about 5 minutes.

If you have problems with the survey below, you can complete it on Survey Monkey’s website here

We’re delighted to let you know that OH Services will be launching their first set of live online courses. Their first course will be on fibroids and will explore the emotional impact of fibroids. The course will be led by counsellor Olivia Haltman and will run over several weeks. This new course will allow attendees to:

• Look deeper into how fibroids can affect a woman’s emotions
• Explore how they can effectively change their wellbeing
• Focus on themselves and their healing
• Take their emotional awareness to another level

This course is open to women affected by fibroids, friends or family members of fibroids sufferers and health professionals who would like to better understand this issue so they can support their patients.

You can register your interest in taking this online course here  and if you have any questions about the course, please  email OH Services , call them on 00 44 577 565 218 or follow them on Twitter (@OHServices2018)

To find out more about OH Services, you can read our blog post here or visit their website.  You can also listen to our interview with Olivia Haltman about the emotional impact of fibroids by clicking on the link below.

Episode 7: We talk to counsellor Olivia Haltman about the emotional impact of fibroids

Back in November 2017 we published a blog post where we summarised research on hair dyes, relaxers and breast cancer, and (sigh) we’re sorry to say we’re back here again writing about black hair products and their harmful effects.

A couple of weeks ago the results from another research study was published and this showed that 80% of black hair products contain endocrine disrupting and asthma causing chemicals. Endocrine disrupting chemicals are of concern as some studies have linked these chemicals to hormone-related health conditions including breast cancer and fibroids.

Latest Research

On 25^th April 2018, researchers from the Silent Spring Institute and Battelle Memorial Institute in the USA published the results from their study which investigated the endocrine disrupting and asthma-associated chemical content of black hair products. They tested 18 black hair products that cut across 6 types of products. These included hot oil treatments, anti-frizz/polish, leave-in conditioners, root stimulators, hair lotions and relaxers. Within these products they tested for the presence of 66 chemicals including BPA, phthalates (a solvent) and parabens (a preservative).

What Did They Find?

Researchers found that the black hair products tested contained 45 endocrine disrupting or asthma-associated chemicals. They stated that they found cyclosiloxanes (used for conditioning and spreadability), parabens and the fragrance marker diethyl phthalate (DEP) at the highest levels, and DEP most frequently in these products.

In their study, root stimulators, hair lotions and relaxers more frequently contained nonylphenols, parabens and fragrances whilst anti-frizz products tended to contain cyclosiloxanes.  Worryingly hair relaxers for children contained five chemicals that are regulated by California’s Proposition 65 or were prohibited from being used in the EU.

What we found particularly disturbing was that ingredients lists were incomplete, meaning that the researchers found chemicals in the products that were not listed on product labels. This is disturbing because many women do try to avoid chemicals such as parabens, but researchers found that butyl and ethyl paraben were never listed on labels and 12% of products with methyl paraben didn’t include this on their label. This is extremely misleading and means that women can’t make an informed choice about the products they purchase. Other chemicals that were frequently not included on ingredients lists were fragrance chemicals and cyclosiloxanes.

You can listen to  Dr. Jessica Helm from the Silent Spring Institute and Tola Okogwu from My Long Hair Journey discuss this latest study in the video below.

California’s Proposition 65 and EU Regulation

There are regulations in place to protect consumers and deter manufactures from including chemicals that are hazardous to our health in their products. Two such regulations are Proposition 65 and the European Union Cosmetics Directive.

California’s Proposition 65, more formally known as the Safe Drinking Water and Toxic Enforcement Act, aims to “help Californians make informed decisions about protecting themselves from chemicals known to cause cancer, birth defects or other reproductive harm.” By law, all businesses selling products to people in California must ensure clear and reasonable warnings are included on items that contain harmful chemicals so that people are aware that they will be exposed these chemicals. Some chemicals that are regulated by Prop 65 are o-phenylphenol, BPA, phthalate, ethanolamine and benzophenone.  Businesses don’t have to include any warnings if the chemicals are at concentrations that don’t pose a health risk. Now, in this current study,  it was found that even though two no-lye hair relaxers for children contained a Prop 65 regulated chemical, no warnings were included, and researchers made the point that these would not meet the Prop 65 labelling requirements.

The EU Cosmetics Directive states that all cosmetic products sold in the EU must be safe and they prohibit the inclusion of chemicals in products that have been shown to cause cancer, female reproductive toxicity and developmental toxicity. Some of the compounds prohibited by the EU include BPA, phthalate, alkylphenol and ethanolamine. In this study, some products were found to contain products prohibited by EU law – BPA, phthalate, nonylphenol and diethanolamine. So these products would not be fit for sale in the EU.

What Can We Do?

Well… ladies, we must demand better from brands. We must see what we can do to get companies to remove these chemicals from their products. In the meantime, we have to be very selective and only buy from brands that sell products that are safe, but this can be hard to do if brands are not listing all the chemicals in their products on their labels.

 Here are some brands that we use, or have used in the past, and we believe are safe, but we recommend that you do your research too.

Afrocenchix
Almocado
Camille Rose Naturals
Pure Goodnes
Root2Tip
Shea Butter Cottage
Shea Decadence
Yaphene

Finally, we are currently in discussions with the team behind My Long Hair Journey to see what we can do to start addressing this problem. We’ll keep you updated and let you know how these discussions go. In the meantime, let us know your thoughts on this topic. How do you feel about this new piece of research and are you concerned about the hair products that you use?

More Information

You can download the full research paper below as well as the study’s supplementary material which lists the brands tested in this study and information about EU regulation and California’s Prop 65. And, you can purchase some of the products from the brands listed above on Amazon below.

We are so delighted to announce that we will be launching our fibroids self-care webinar series in the autumn. The aim of this series is to empower women affected by fibroids with information, knowledge and practical tips to take action to improve their health and wellbeing.

The series will include four webinars led by experts in the field of gynaecology, nutrition, exercise and mental health with a fifth session being an Our Stories session. In this final session attendees will hear from women who have conquered fibroids and will have the opportunity, if they wish, to share their own experiences. We will also explore challenges, useful tips and discuss solutions. Lake Health and Wellbeing will use this session to listen, understand the current experience of women with fibroids and work with attendees to explore how we can best support women with fibroids.

If you have fibroids, this webinar series will be perfect for you. It will give you the opportunity to meet other women with fibroids and provide you with access to experts in the field, all from the comfort of your home. This is not to be missed.

The webinars will be held every two months and there will be a small charge.

For more information and to register your interest, please contact us on events@lakehealthandwellbeing.com  or you can sign up to our fibroids mailing list here

More details will follow very soon.

Disclosure: this post contains an affiliate link. Find out more here