Fibroids are benign tumours that develop from the smooth muscle cells of the womb. They are the most common tumour amongst women with an estimated 30 – 40% of women between the ages of 25-45 expected to develop them.

Research has shown that fibroids are more common in black women with an estimated 55-80% of black women affected. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger and multiple fibroids, and tend to develop more severe symptoms.  The reason for this is unknown but it is thought to be a combination of genetic, environmental and lifestyle factors.

Through our interactions with black women, we have anecdotally found that whilst fibroids are very common there seems to be a lack of information and support for women who are affected.  To explore this issue further we conducted a survey that aimed to explore the needs of women with fibroids, determine if there is a need to develop information and support and if so,  the survey aimed to inform our development of a fibroids information and support programme.

The survey explored four areas:

• The level of knowledge of fibroids prior to diagnosis
• Treatment and diagnosis
• The effect of fibroids and its treatment on quality of life
• The availability of support and information

The key findings from  our survey were:

Awareness of fibroids prior to diagnosis

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis
• There was a good level of awareness of some of the main symptoms of fibroids but a low level of awareness of other symptoms
• Participants were aware that ethnicity was a risk factor for fibroids but less aware of other risk factors

Pathway to Diagnosis

• The majority of participants delayed seeing their GP for six months or more after first noticing symptoms
• After visiting their GP, most women received a confirmed diagnosis within 4 weeks but over a quarter stated it took 12 months or more to receive a confirmed diagnosis

Treatment

• Despite 79% of participants having a discussion with their GP about treatment, 63% stated they didn’t feel they had enough information to make an informed decision about their treatment
• The majority of participants (42%) had surgery to treat their fibroids
• A quarter of respondents were very happy with their follow-up and aftercare whilst 33% stated that they were not at all satisfied.

The Effect of Fibroids and its Treatment on Quality of Life

• Participants reported that fibroids and its treatment significantly affected their quality of life, affecting them not just physically, but emotionally
• Many participants did not feel they had enough support  to assist them in managing or overcoming the  emotional, physical  and medical impact of fibroids

The Availability of Information and Support

• The biggest gaps in the availability of support were in information and peer support with a small gap in emotional support

Conclusions from the Survey and Next Steps

The survey suggests that a significant number of women with fibroids do not have access to the support and information that they require. The Lake Foundation will focus its efforts on addressing the gaps in the availability of information and support by developing a relevant support system for women, particularly black women, with fibroids.

We have started this process with the launch of our ‘Fibroids Ask the Expert’ in October. This resource provides women with the opportunity to obtain accurate reliable information from experts in the field. In 2015 we will begin to develop a range of publications and explore a support programme for women with fibroids.

What is Lupus?

Lupus is a chronic (it lasts a long time) disease where the body’s immune system doesn’t function properly and begins to attack healthy cells, tissues and organs.

There are four types of lupus. The most common type of lupus is systemic lupus erythematosus (SLE); it can affect many parts of the body such as the heart, kidney, brain and lungs. The second type of lupus is called discoid lupus erythematosus (DLE) and this affects the skin causing rashes and a change in the colour of the skin. Drug-induced lupus is caused by certain types of medication (for example hydralazine and procainamide which are used to treat heart conditions). It tends to be a mild form of lupus and goes away when the medication is stopped. Finally, neonatal lupus is a very rare type of lupus that affects newborn babies.

It is not contagious, the severity of the disease varies from person to person – it can be mild or severe – and today, patients rarely die from lupus as an improved understanding of the disease and advances in healthcare has meant that patients can successfully manage their condition.

What  Are the Causes?

The exact cause is unknown but it is thought to occur due to a combination of genetic and environmental factors. There are certain triggers that cause someone’s immune system to become activated inappropriately and attack the body. These triggers include infections, drugs, sunlight and hormonal changes. These triggers as well as a genetic predisposition are thought to lead to lupus.

Researchers have found that there are a number of different genes that together dictate whether a person will develop lupus, what type of lupus they will develop and how severe it is.

What are the Symptoms?

Because lupus can affect a number of different organs and tissues, it can cause a variety of symptoms. The most common symptoms are:

• Joint pain
• Swelling of the joints
• Muscle pain
• Fever
• Rashes, mostly on the face
• Chest pain
• Hair loss
• Pale or purple fingers or toes
• Sensitivity to the sun
• Swelling in legs or around eyes
• Mouth ulcers
• Swollen glands
• Fatigue

Less common symptoms include anaemia, headaches, dizzy spells, depression, confusion and seizures.

The symptoms and the severity of symptoms vary between people. Some sufferers will have episodes where they experience symptoms followed by periods where they have no symptoms whilst others will have symptoms all the time.

Diagnosis and Treatment

Diagnosing lupus is very challenging because recognising the symptoms can be difficult. This is because the symptoms can seem quite vague, are similar to those of a number of other conditions and they may come and go; this makes it hard to pin down what may be causing the symptoms. Furthermore, there is no specific test for lupus and this all means that it can take years for a patient to receive a confirmed diagnosis.

To make a diagnosis doctors have to carry out several tests and they’ll also have to look at the person’s medical history. The American College of Rheumatology has developed the ‘Eleven Criteria of Lupus’ to help doctors diagnose lupus. A person must have four or more of these criteria for a diagnosis of lupus to be made.

Lupus is incurable so when it comes to its treatment patients are typically given medication to help manage their symptoms and are also given advice on lifestyle changes such as avoiding triggers.

Who is at Risk?

Lupus is a fairly rare disease and in the UK it affects just 5 in 10,000 people. It is more common in women with 90% of suffers being women and most of these women are aged between 15 and 44.

Black women and Hispanic women are at a higher risk of developing lupus as are people who have family members with lupus, have taken certain medications and have been affected by specific infections such as Epstein-Barr virus and cytomegalovirus (CMV).

This means that the key risk factors for lupus are:
1. Age
2. Gender
3. Ethnicity
4. Family history
5. Taking certain medications
6. Certain infections

Black Women

Black women are three to four times more likely to develop lupus than their white counterparts and results from the Lupus in Minorities study has shown that black women develop this condition at a younger age, experience more severe symptoms and overall develop more complications. When looking closely at these complications, black women with lupus tend to develop more neurological complications (such as seizures and strokes) and are more likely to develop lupus-related kidney disease.

Researchers are trying to understand why it is more common in black women and why it is more severe. It is thought to be due to a combination of genetic and environmental differences.

The Black Women’s Health Study identified four specific genetic differences that are associated with a higher risk and these were seen in black women with lupus.

As work continues in this area we can begin to gain a better understanding of why lupus is more common in black women and hopefully this will provide information that can help in the development of effective treatments.

For more information about lupus please visit Lupus UK’s website and if you are concerned about any symptoms you may have, visit your GP.

Today is the final day of Breast Cancer Awareness Month and in this week’s blog, we want to end the month by highlighting the key things that women should know about this disease, which are: the signs and symptoms, risk factors, prevention and the screening process.

The Signs and Symptoms

The symptoms of breast cancer can be identified by carrying out regular breast self-examinations. These should be done at least once a month. The aim of the self-examination is to do a visual and physical inspection of your breasts. You can do the visual part in front of a mirror and you should look out for changes in the size, shape and texture of your breasts as well as changes to your nipples (inverted nipple or a discharge).

Once you’ve carried out a visual examination, the next step is to do a physical one where you use the palm of your hands to feel both breasts and your armpit area for any lumps.

If you notice any of the symptoms of breast cancer visit your GP or doctor as soon as possible. It may not be breast cancer but it is best to rule it out.

You can find out more about how to do a breast self-examination in the video below.

The Risk Factors

The two main factors that increase a person’s risk of developing breast cancer are age and family history.

Age: As we get older our risk of developing breast cancer increases. The majority of breast cancers (80%) occur in women who are aged 50 and over.

Family History/Genetics: 5-10% of breast cancers are hereditary. If you have one first-degree relative with breast cancer, this doubles your risk of developing breast cancer, and if you have two first-degree relatives with breast cancer, this triples your risk.

If you have a family history of breast cancer, visit your doctor to discuss your risk and for more information about hereditary cancer please read our recent blog post.

Other factors that have been shown to increase a person’s risk of developing breast cancer include: being overweight or obese; alcohol consumption, hormone replacement therapy; smoking; and oestrogen and progesterone contraceptives.

Breast Cancer Prevention

To reduce your risk of developing breast cancer you should adopt a healthy lifestyle. In particular, you should: limit your alcohol intake, stop smoking, maintain a healthy weight, exercise regularly, eat a diet rich in fruits and vegetables but low in animal fat; and if you have the choice, breastfeed.

Breast Cancer Screening

In the UK all women between the ages of 50 and 70 are invited for breast screening every 3 years as part of the national breast screening programme. Women over the age of 70 can still be screened, you’ll have to contact your local breast screening unit to organise this. In England, the breast screening age is being extended to all women between the ages of 47 and 73.

Breast screening involves having an x-ray of each breast (this is a mammogram) which allows a clear image of the inside of the breast to be developed. This technique is capable of detecting breast cancer at an early stage, much earlier than a breast self-examination.

To find out more about the NHS Breast Screening Programme please visit their website

Now that Breast Cancer Awareness Month has come to an end, remember to remain breast aware throughout the year.

We get a lot of questions from women about what they can do prevent fibroids. In this week’s blog, we’ll look at the effect of exercise on the development fibroids.

Fibroids are non-cancerous tumours that develop in or around a woman’s womb. They can cause a number of symptoms including pelvic (tummy) pain, infertility, heavy and/or painful periods, back pain, anaemia, constipation, frequent urination and pain during sexual intercourse.

The exact cause of fibroids is unknown but research does suggest that fibroids are caused by a combination of genetic, lifestyle and hormonal factors. Those most at risk of developing fibroids are black women, those who are overweight, women of childbearing age (particularly women who are 25-45 years old), those with a family history of fibroids and women who haven’t given birth.

Exercise and Risk Reduction

When looking at these factors and trying to understand what preventative steps women can take, exercise seems like a logical factor to explore for two main reasons. Firstly, being overweight increases risk of developing fibroids so a woman can reduce her risk by maintaining a healthy weight through exercise. Secondly, fibroids are a hormonal condition with oestrogen and progesterone playing a role in their development. When we look at similar hormonal conditions that have been widely studied, such as breast and endometrial cancer, exercise has been shown to be beneficial in reducing risk. This is thought to be because exercise has a number of effects on our hormones which ultimately can lead to a reduction in the level of hormones circulating in our body and balancing of our hormones.

What Research Tells Us

A recent small study published in 2013 by Peking University in China looked into the association between physical activity and fibroids. They found that women who participated in moderately intense occupational activity (physical activity at work) had a significantly lower risk of developing fibroids.

In 2006, The National Institute of Environmental Sciences in Washington DC published the results of their research study exploring the effect of exercise on the development of fibroids. This study included 1189 women (734 black women, 455 Whites) aged 35-49. Whilst their study did have some limitations they found that women who did the most physical activity (more than 7 hours a week) were significantly less likely to develop fibroids than those who did the least amount of exercise (less than 2 hours a week). They also found that the association between exercise and fibroids was similar for both black and white women.

Finally, in 1986, the Harvard School of Public Health published their study which compared the prevalence of fibroids in former college athletes (2,622 women) to non-athletes (2,776 women). They found that the non-athletes were at a 40% greater risk of developing fibroids than their athletic counterparts.

Conclusion

Research and theory demonstrate that regular exercise is an effective way to reduce your risk of developing fibroids. By introducing as much exercise as you can into your weekly routine you can make a significant difference to your risk.

The UK’s Department of Health recommends that we do a minimum of 150 minutes of exercise per week; this is a good target to aim for.