Category Archives: Awareness Campaigns

Living with Lupus | Sejal’s Story

Managing Lupus and Advice for Other Sufferers

Sejal Lupus is a severe condition that affects the immune system. It causes the body to over-produce antibodies, resulting in inflammatory reactions. It can irreversibly damage many of the important organs, including the kidneys, heart, lungs and brain.

The illness is more common in women as it is triggered by hormonal changes during puberty, childbirth or menopause. Lupus is a lifelong, chronic disease that is currently incurable. It has many associated symptoms, including fatigue, muscle pain and hair loss. Read more

Volunteer Bike Couriers Deliver Blood and Medical Supplies

Blood Bikes: These Motorcyclists Save Lives

If you’re a motorbike enthusiast and want to help save lives, consider becoming a blood biker. The Nationwide Association of Blood Bikes was set up over 40 years ago to help the NHS transport urgently needed blood, patient notes and medical supplies out of hours.

Cornwall’s Motorcycle Heroes

Cornwall Blood Bike's motorcycles

Cornwall Blood Bike’s motorcycles

Ian Butler, 51, is a submarine project engineer by day and has been an active member of Cornwall Blood Bikes for a number of years.

“I first heard about Cornwall Blood Bikes in February 2014, when I was watching an episode of Emergency Bikers. There was a two minute slot on the UK’s Blood Bike set up. It featured the Western group operating around Bristol, but it really caught my interest and the next morning I went on the internet to find my nearest group.

“I wasn’t getting out on my bike very much, once every 2 weeks or so, and being ex Royal Navy, the team structure really appealed to me. It was also an excuse to go on the Advanced Biking Course.” Read more

Does Sugar Cause Diabetes and Other Health Issues?

Health Impacts of Too Much Sugar

You‘ve probably seen headlines and articles saying that sugar is a cause of the rise in cardiovascular diseases and obesity levels in the UK, but what exactly about this innocent looking substance is so harmful to our health? And what health conditions is it actually linked to?

sugar on spoonWhat Is Sugar?

Sugar is made up of glucose and fructose. Fructose is broken down in the liver, whereas glucose is digested in the stomach and requires insulin to metabolise it properly.

Naturally occurring sugar is found in all fruits, vegetables and dairy foods, but in relatively low quantities. In these foods it is accompanied by vitamins, antioxidants, water and fibre, all of which have health benefits. Processed sugar doesn’t have any of these added nutrients, proteins or fats, and is just pure energy, which is why you get an initial boost but then a come-down shortly after eating sugary foods. Read more

Road Safety Week: Promoting Cyclist and Pedestrian Safety

Road Safety Week 2015

Britain’s roads are some of the safest in the world, but sadly, accidents do happen. Every day. That’s why road safety charity Brake started Road Safety Week.

family cyclingBrake work with local councils and communities to make streets safer for pedestrians, cyclists and drivers alike, and offer support to victims of road accidents.

Founded in 1997, Road Safety Week works with schools, organisations and communities to raise awareness of road safety and share simple steps that everyone can take to prevent accidents. Organisations such as nurseries, youth clubs, local businesses, sports clubs and local authorities often get on board with the initiative.

This year’s event runs from 23rd-29th November and the theme is Drive Less Live More, with a focus on the benefits of cutting down the amount of driving you do. These benefits include:

  • reducing pollution
  • saving money on fuel costs
  • supporting public transport
  • burning calories through exercise such as walking or cycling
  • making streets safer by removing extra vehicles

Read more

AF Association supports Medical ID for AF Aware Week

Atrial Fibrillation a Common Heart Disorder

A volunteer carrying out the simple pulse check for AF

A volunteer carrying out the simple pulse check for AF

AF or ‘atrial fibrillation’ is the most common heart rhythm disorder, which occurs when chaotic electrical activity results in the heart pumping too fast, too slow or irregularly. It affects over one million people in the UK alone, and if left undiagnosed and untreated it can lead to serious complications including stroke, heart failure and even death.

Every 15 seconds someone suffers an AF-related stroke – AF is the single biggest risk factor for suffering a deadly or debilitating stroke. For individuals with the condition, the risk of suffering a stroke is increased by nearly 500%.

However, many of these devastating strokes can be prevented, as AF can be detected cheaply and easily with a manual pulse check. Read more

Marfan Syndrome: A Rare Connective Tissue Disorder

A Rare Inherited Disorder

Marfan logoMarfan syndrome is a fairly rare genetic disorder that effects the body’s connective tissues, whose purpose is to maintain the structure of the body and support internal organs. Although a rare condition itself, affecting about 1 in 3,000 people, it’s one of the most common connective tissue disorders. Marfan syndrome is hereditary, with about 75% of cases being passed on from one parent and a child has a 50% chance of receiving it. Some people however, do not inherit it: spontaneous mutation is when the individual’s cells mutate on their own.

What Is Marfan Syndrome?

Connective tissue is found through-out the body and is made up of a range of fibres which gives the tissues its elasticity. A protein called fibrillin is part of these elastic fibres, but Marfan syndrome creates an abnormal or deficient version which makes the fibres unusually stretchy and weak. It can make some bones grow abnormally long and be more brittle than usual, while stretch marks are and joint pain are also common occurrences. Read more

Are E-cigarettes a healthy way to quit smoking for Stoptober?

With New Legislation to Reduce Second-hand Smoke, Could E-cigarettes be the Best Way to Quit?

From the beginning of October, a new law comes into effect that bans adults from smoking in a vehicle whilst children under the age of 18 are present. Warnings or fines will be handed out at police discretion to both the driver and anyone else smoking in the car.

smoking in the carThese regulations come after new research shows an estimated 40% of children are exposed to second-hand smoke, with smoking in cars found to be particularly hazardous due to the enclosed space.1

Children are particularly vulnerable to the effects of second-hand smoke, which can cause respiratory tract infections, asthma and wheezing plus other more serious conditions like cancer.1

It’s also Stoptober this month – a Public Health England initiative that challenges the general public to give up smoking for 28 days during October, with the idea being that you are then 5 times more likely to quit permanently. Stoptober packs are available online and there’s lots of advice and motivation to keep you on track.

With the new law and Stoptober coming along together, has there ever been a better time to quit? Read more

Diagnosis of rare kidney condition leads to awareness website

Diagnosis of Rare Genetic Kidney Condition

Natalie wearing her ID Band bracelet

Natalie wearing her ID Band bracelet

Natalie Gee, from Suffolk, has been living with Gitelman Syndrome, a rare genetic kidney disorder, since she was born. However it wasn’t diagnosed until 15 years ago and, as many people (medical professionals included) still know little about it, she made it her personal mission to raise awareness.

“Gitelman Syndrome is a life-threatening genetic disorder which affects your kidneys. A key component of the kidney doesn’t function correctly. This means that your body ends up losing salts like potassium and magnesium in your urine to dangerously low levels. This can make your heart not be able to beat correctly, or cause your muscles to not work properly, as well as other critical functions being affected.”

Living with a Rare Disease

“Living with Gitelman Syndrome can be a massive struggle. I personally, have to take up to 40 tablets a day and the medication can make me feel pretty ill at times. I suffer with painful muscle cramps and numbness due to the low levels of potassium and magnesium in my body, and often find myself quite short of breath, exhausted and dizzy.

Read more

An Endometriosis sufferer’s fight to raise awareness

Endometriosis – An Uncommonly Recognised Condition

Aleks campaigning to raise awareness

Aleks campaigning to raise awareness

Aleks Wells from Newbury, Berkshire suffers from a little known disease called endometriosis.

“I have endometriosis. It’s unlikely that you know what it is; despite the estimated one in 10 women potentially suffering from it, the awareness of the disease is still very low. And yet it’s had the most profound effect on my life.”

A Long and Difficult Diagnosis

Diagnosis can take years and can involve pelvic examinations and scans.

“Women with endometriosis grow endometrium – the tissue that normally lines the uterus and is designed to bleed during the monthly cycle – outside of it. When it happens, the blood can’t escape the body in the form of a period and is trapped inside the abdominal cavity. The resulting irritation and inflammation can lead to ovarian endometrial cysts as large as 15 cm in diameter and in advanced stages, adhesions where fibrous tissue causes internal organs to stick together. All that is potentially extremely painful. All that invisible. All that potentially harmful to the effective working of the female reproductive system.

“I was diagnosed with endometriosis in June 2014, after years of painful periods. 12 years after a misdiagnosis with “potentially, maybe” Polycystic Ovaries Syndrome; the doctor “couldn’t be sure”. 10 years after a correct diagnosis which was only ‘by the way’ and whose significance I didn’t understand. Throughout that time, the doctors repeatedly dismissed my painful periods and told me to simply “get on with it”. Mine is not an isolated case. A correct diagnosis can take years and even the NHS website warns about the difficulties caused by the nature of the symptoms.” Read more