Purple Day was founded in 2008, and is celebrated each year on March 26th
International Purple Day: Raising awareness of epilepsy
Purple Day is a worldwide event dedicated to raising awareness about epilepsy. Since Canadian Cassidy Megan created Purple Day in 2008, March 26th has seen people from across the globe join together for the cause.
Supporting Purple Day can be as simple as wearing an item of purple clothing. However many organise events to not only raise money for epilepsy charities, but to give people a chance to discuss epilepsy and meet others with the condition.
600,000 UK people living with epilepsy
Purple Day offers fantastic support for those who suffer from epilepsy as well as their families and friends. There are currently over 600,000 people in the UK who are living with epilepsy. Yet despite these numbers the condition is still often misunderstood by the public. 1 in 10 people will have a seizure at some time in their lives.
Epilepsy is a condition that is characterised by seizures. A seizure is caused by a disturbance of electrical activity in the brain. This can then can manifest itself physically
Cassidy Megan – founded Purple Day to raise awareness and dispel the myths surrounding epilepsy
in a number of ways. Seizures can be mild or severe. A mild seizure can cause brief loss of consciousness and loss of muscle tone. However more severe seizures can leave the sufferer totally unconsciousness and their body stiff.
Do and Don’ts for Seizures
If you are with someone and they are having a seizure that causes jerky body movements (know as a tonic-clonic seizure ) you should do the following:
move them from anything that could cause them injury, such as a hot stove or away from traffic
note the time of that the seizure began, this can be important for medical treatment later. Try and time the seizure.
rest their head on clothing or a cushion if they are on the floor
help them to breathe by loosening ties, scarfs or other tight clothing around their necks
when the convulsions begin to stop, put them in the recovery position by turning them on their side, again keeping their airway open
reassure them and talk to them gently. Having a seizure causes embarrassment and anxiety. People are often confused when they come round. Stay with them.
Don’t put your fingers or anything else in the person’s mouth, they will not ‘swallow their tongue’ although they may bite it but it will heal and not cause lasting damage. Putting anything into the persons mouth could be dangerous or cause them harm.
When should I call an ambulance?
People with epilepsy may have seizures quite frequently and do not need to go to the hospital each time. Most seizures last less than 5 minutes. The person will usually be able to let you know if they require an ambulance or not. People with epilepsy may have a mediband, sos bracelet or necklace or carry an emergency card to let people know what to do.
You should call an ambulance by dialing 999, if:
you know that the person has never had a seizure before
the seizure goes on for more than 5 minutes
seizures occur in a series, and they appear to stop, but then begin again
the person does not regain consciousness or is having difficulty breathing
Dravet Syndrome
Although epilepsy is relatively common in the UK, there are rarer epileptic conditions. My son has Dravet Syndrome which is a rare and life-threatening form of epilepsy that is diagnosed in children. Dravet Syndrome affects around 1 in 30,000 children in the UK. Whilst this is rare, they are around 200 families on our UK Dravet Facebook group.
Many children who are diagnosed with Dravet Syndrome develop normally until they have their first seizure around 3 to 6 months old. After the epilepsy begins children will gradually lose the developmental skills they previously had and find it hard to progress and learn. The developmental issues that occur with Dravet Syndrome can cause delays in speech and language, motor skills and the functioning of the nervous system.
Whether it is rarer forms of epilepsy such as Dravet Syndrome, or common forms – the effect of the symptoms strongly impact upon the quality of life of those that have epilepsy. That is why global awareness raising events like Purple Day are so important in raising funds and over coming the stigma that can come with the condition.
The XL Challenge
A fun way to support Dravet Syndrome charities and epilepsy research this year is to follow David of thexlchallenge.com. David has so far completed challenges including a dip in the sea for New Years Day, fun runs, eating bugs in a bush tucker challenge, half marathons and Terror nights!
David is doing 40 challenges in his 40th year and raising lots of money and awareness of Dravet Syndrome and epilepsy along the way.
David after a charity run in Cypress
He still has many unusual tasks to complete this year, follow him on twitter, check out his page and sponsor him!
Getting Involved in Purple Day 2013
A pair of fantastic Greeper Laces are on offer to anybody who mentions purple day on their blog and links back to us.
To celebrate Purple Day 2013, we are offering a 10 free pairs of purple Greeper Laces to our readers who are willing to share their thoughts on the event.
Perhaps you’re hosting a Purple Day party, or taking part in a sponsored event? Epilepsy Research UK offer a fundraising pack filled with ideas to raise awareness and bring support to those with epilepsy this Purple Day. From wearing purple to school or work, or even dying your hair purple – like Helen Webster of Salisbury.
Purple Day Laces Giveaway!
We’d love to hear your Purple Day stories or accounts of living with epilepsy. Or even a mention of Purple day on your blog to help raise epilepsy awareness. Simply write a short blog post (at least 200 words) and give Purple Day a mention, leave a comment below. We will send you a free pair of awesome ‘once applied always tied’ purple Greeper Laces. (offer limited to UK residents, 10 pairs to give away!) **Sorry Offer Now Closed**
All women lose hair whilst brushing, however for some the loss can suddenly become more noticeable.
Female hair loss affects around 8 million women in the UK alone. This statistic shows that hair loss in women is as important an issue as it is for men. There are varying degrees of hair loss that can effect women. From fine and thinning hair, to total baldness and bald spots. Women of all ages can suffer from this terrible condition. Like female incontinence that we covered in a recent post, this is an issue where good information can be hard to find. Recently BBC journalist Claire Millar wrote a piece about how her hair loss affected her. She said “I remember going through a whole range of emotions. I felt embarrassed, upset and scared.” If you suffer from female hair loss, especially at an early age you may find yourself under great pressure to live up to what is expected of you as a woman.
Personal experience from Diane, one of our readers:
I have had Alopecia since I was a child. At exactly what age I’m not sure. My mother used to tell me that at one point I lost all my hair and had a blond wig.But I have no recollection of it at all.
I spent a lot of my childhood in hospital with Rheumatic ever and stills disease.
As a child I was given various disgusting smelling potions but none had an effect other than making me smell weird!
Hairdressers have become a phobia because of insensitive comments, who would inevitably feel the need to share her findings with the rest of the salon. Believe me I tried various places,some worse than others but damage well and truly done.
My hair loss is now spreading (I’m 49) I was diagnosed with Sjorgens Syndrome a year ago which I believe is a symptom of this too.
I have very sensitive skin and have to be really careful which shampoo to use. I wash my hair as little as I can get away with. I have yet to find shampoo that doesn’t irritate me.
I wear my hair long so that I can tie it up and hide the patches.
Would love to have my hair short again as it would be so much easier to handle.
Would be really grateful of any suggestions that may make it easier to live with.
Please read on for further information about what causes female hair loss, and how to manage the condition.
Female Hair Loss Causes
Female hair loss is a condition that is very hard to disguise. As it effects your outwards appearance, many women emotionally struggle to cope with the condition. There’s an old saying that a woman’s hair is her crowning glory. This says a lot about the pressure society places on women to have a healthy and full head of hair.
Stress Hair Loss
There are many causes of female hair loss. If you are suffering from severe stress or nutritional deficiencies for example, you may witness a temporary change in your hair condition. Both women and men who find themselves facing emotionally draining life-changes can lose hair. This is a condition called “telogen effluvium” – a temporary shedding of hair from the head and sometimes other parts of the body.
It is noticed as a thinning of the hair rather that patches of baldness. This hair loss can happen quite suddenly, however usually grows back within 6 months.
Hormonal Hair Loss in Women
There are a number of health conditions that cause significant changes in a woman’s hormonal balance.
However the hormone mostly responsible for female hair loss is testosterone.
Illnesses such as PCOS (Poly Cystic Ovary Syndrome) often cause women to produce increased levels of testosterone.
This in turn can effect many aspects of their health. Increased testosterone in women is initially discovered because of irregular periods. However this symptom is usually teamed with one or more of the following health concerns:
Acne in adulthood
Infertility
Facial hair growth
Weight gain (especially around the middle)
Type II diabetes or Insulin Resistance
Depression
Hair Loss
A typical example of hormone-related male-pattern baldness on a woman.
As women with PCOS can produce too much testosterone, they can suffer from male-pattern baldness. Unlike temporary stress-related
hair loss this can often be permanent. However most women do not suffer bald patches from their loss. It’s more an over-all thinning of the hair, especially along the parting.
Diet and Women’s Hair Loss
A poor diet can lead to vital vitamin deficiencies. These deficiencies can in turn lead to problems such as hair loss. A healthy and balanced diet is not only important for weight watching. Each vegetable and fruit offers an important vitamin or mineral that is essential for a balanced diet. The colour of each piece of fruit or vegetable is a reflection of the vitamins and minerals contained inside. One of the easiest way to insure you eat a balanced diet is to eat a “rainbow” selection of fresh produce everyday.
However if eating a healthy diet still leaves you with thinning hair, you may have a specific deficiency caused by an underlying health problem. If you feel this is the case you must contact your GP. Deficiencies in Iron, Vitamin D and B12 are essential for healthy and strong hair growth. Women who suffer from eating disorders such as Bulimia and Anorexia can often lose hair due to vitamin deficiencies caused by a lack of food intake.
Hair loss caused by drug side effects
@trabasack I lost hair when put on #methotrexate..it was awful as I had really nice long hair..it felt worse than the actual drug effects
If your hair begins to thin after beginning a new drug treatment, be aware that there are many medicines that can cause alopecia as a side effect. It is worth checking with your GP if there are alternatives, if you believe this is happening.
Female Hair Loss Treatment
There are several types of hair loss treatment for women. If the hair loss is caused by temporary conditions such as stress, it is easier to find a treatment that works.
However if hair loss is caused by hormonal imbalances, finding a cure is more difficult.
Unfortunately there currently isn’t a true cure for male-pattern baldness. However there are products that can help to strengthen the hair you do have, providing extra thickness and some regrowth.
Caffeine Shampoo
Shampoos with caffeine have the ability to travel down the hair follicle to infiltrate the root and scalp, promoting hair growth.
New to the market are caffeine shampoos. These hair treatments contain caffeine, which has been proven to stimulate hair growth. The caffeine reaches the hair follicles whilst you wash your hair, and is safe enough to be used daily. Once the shampoo has been washed off, the caffeine stays within the follicle and in the scalp skin. This means it continues to work even after it has been washed off.
Many women have seen fantastic results after only a few weeks of switching to a caffeine based shampoo, despite scepticism from the medical profession (see video below). The ingredients are designed to not only stimulate hair growth, but improve the structure and strength of the hair you have already.
Statistics show that even if new hair growth can not be achieved, maintaining the hair you do have is just as important.
Often women with hair loss will find that what is actually happening is that their current hair has become thinner than it used to be. This can give the impression of hair loss. However, if you work towards keeping your hair healthy and ensuring hair follicles are thick you can feel more confident about yourself and your hair style.
There is a transcript of this video at the bottom of the page.
Minoxidil for Female Hair Loss
Another scalp treatment for female baldness is the drug minoxidil. Minoxidil is a proven treatment and comes in the form of a lotion. Many women see a slow-down of hair loss almost days after first usage. Most importantly, at least 25% of women see a change in hair thickness and growth with the first few months of use. Although this treatment is not available on the NHS, it is often recommended by GPs.
Spironolactone
When we asked on twitter for any products people had found helpful we had this tweet:
@lwdisability Spironolactone can stop further hair loss in women, but uusually need to see a skin specialist to have it prescribed ❤
Spironolactone is a diuretic that also acts to block male hormones. It may be worth asking your doctor for a referral to a specialist if you think this may help you.
Food Supplements for Hair Loss
There are a number of brands now creating tablets especially for female hair loss. Whilst these can be expensive, the results are often positive. Most tablets contain essential vitamins and minerals needed for healthy hair growth. Many high street chemists stock their own generic versions of these supplements if you find the branded ones too expensive.
Head massage for female hair loss can bring positive results whilst also being a relaxing experience.
Head Massage for Hair Loss
Massage of the scalp can also offer positive results. Using specially chosen essential oils for scalp massage is very important. Firstly
there are grades of massage oil. Essential oils or absolutes are the purest form of oil and you should try to buy these if possible. After this there are “dilutes” that are a mix of essential and “carrier” oils. These are cheaper than absolutes but less effective. Finally “fragrance” oils should be avoided as these are synthetic and do not hold any of the therapeutic qualities of essential oils.
Some of the best essential oils for hair loss are:
To make your own hair loss massage oil, simply mix a few drops of each oil into a carrier oil such as Jojoba or Avocado Oil.
Below is information on how to give yourself a scalp massage to promote hair loss:
Step 1
Place a few drops of essential rosemary oil in your palms and use it to gently massage your scalp. Rosemary can help get rid of excess oil on your scalp, which can clog your follicles. It also helps to stop the growth of any bacteria on your skin and might even replenish hair lost due to a condition such as alopecia areata. Use the pads of your fingers and a circular motion to rub the oil into your scalp for two minutes once a day before washing. This will also break up any buildup and allow it to be washed away more effectively.
Personal Viewpoint from Dale at BeyondPhysical.co.uk
After suffering paralysis as a result of an SCI my hair began to fall out in fistfuls. The shower was like a horror scene, especially as my hair had always been a very important and cherished part of my appearance. My beautiful long red hair began to thin and disappear. I made the decision to cut it all very short to get the best from it.
Cutting my hair shorter than it had been since I was 3 was an incredibly painful process at first. I didn’t want to let go of who I was, and my hair partly defined that. It seemed to emphasize to me how long it would take to ‘get back’ to who I was.
It turned out to be an incredibly liberating experience. It helped reveal the truth to me that you can never go back to who you were and how life was. We are only ever moving forward towards better things and holding on to the past and trying to get back what once was is not only impossible, but also harmful to us in the long run.
Accepting what was happening and what I needed in that moment was one of the reasons I think that cutting my hair short helped. At first my hair still fell out, but not as drastically. The radical cut did seem to give my body a chance to heal as my hair soon stopped thinning, and of course, I learnt to love my new short hair.
I grew my hair back out to its full length eventually and would you believe for the last 3 years I have had it cut short and very short, and now I prefer it. Everything happens for a reason.
Tricologists have told me in the past that alopecia treatments are either steroids or nothing at all, but in both cases it tends to be watch and hope. There seems to be nothing tried and tested in medical terms. There were a couple of things that helped me.
Giving my hair a chance by cutting it short
Accepting the situation as something that wasn’t ‘bad’
The B.E.S.T technique
I found an American holistic treatment called B.E.S.T that helps bring your body back into state where it can heal itself effectively, like it was designed to do. This helped dramatically. The other upside to the treatment was that it helped me heal in other ways, emotionally and physically. I am the UK’s only registered B.E.S.T practitioner. It was so life changing I knew I needed to be able to help others so I trained in it!
Now having benefitted from the experience of others alongside my own experience and research I can offer up the following solutions for hair loss.
Get rid of any amalgams like mercury fillings.
Destox’s your liver, so absolutely no smoking, no sugar, lower carbs and alcohol intake.
Eat only whole foods to increase your nutrition.
Take relevant vitamins, enzymes and minerals
Alongside myself, Kinesiologists and Nutritionists should be able to advise you which supplements are necessary for you personally. Supplements are not generally advisable to everyone always; they need to be tailored to your bodies needs.
The absolute best thing we can do when faced with hair loss is not let it emotionally impact us in a terrible and scarring way. Our greatest chance for healing our situation is to love ourselves regardless.
Dale Rutherford, UK’s only qualified B.E.S.T Practitioner. Dale can be contacted at BeyondPhysical.co.uk or on twitter @BeyondPhys1cal .
Strategies for Coping with Alopecia
The NHS ‘Live Well‘ website has some supportive and informative tips on coping with women’s hair loss including:
Share stories: Talk about it and share your experiences with others. Please feel feel to leave comments on his blog for that purpose.
Join a support group: Contact a local Alopecia UK support group to find the nearest group to you.
Accept it: Although it is difficult, try to come to terms with your hairloss. Using positive thinking techniques, focus on the things that you do well and that are your best qualities. Try and use your energy to concentrate on what you do best.
Talk about it: Tell friends and family members about it so that they can support you. Take time to involve and talk it through with your partner.
Cover up: Find out ways of disguising and covering up your hair loss with things like wigs, hair extensions, scarves and make-up. Keep trying until you find something that suits you. You may decide that you do not want to hide it at all, do whatever works for you.
Visit your Doctor to discuss the options fo an NHS wig. If your hair loss is around 50%, you may be eligible for NHS help. (Click here for info about NHS wigs.) There are also many private and wigmakers and cosmetic options, try a member of the Hairdressing and Beauty Suppliers Association.
Be patient: Hair loss is usually temporary and it will grow back, although it can be a slightly different texture and colour than before.
Products that may help with hair loss
We have compiled a carousel for products that are are available to treat hairloss. Please add comments for any experience you have had with them. Also please feel free to share any of your experiences of hair loss below:
Transcript from Video
00:04 Speaker 1: Hi, My name is Sunita Parkinson, and my question is about hair. There has been a trend in recent months for shampoos infused with caffeine, they claim to strengthen hair and prevent hair loss. I was just wondering what the science is behind this theory, what effect caffeine has on the hair and scalp.
00:24 PF: Questions we put to Dr. Paul Farrant, consultant dermatologist at Brighton Sussex University Hospital Trust and a specialist in hair loss.
00:31 Speaker 3: Shampoos, very rarely stay in contact with the scalp for any length of time. So any active ingredient has to be on contact with the skin for usually minutes for it to have any effect. The question then is whether caffeine as an ingredient has anything other than normal cleaning properties. There is some research using lab based in-vitro study, so this is growing artificially hair follicles that has shown some benefit of adding caffeine, and that seemed to reverse any negative effect of testosterone, which slows down hair growth and actually showed a slight benefit. But in-vitro conditions, they are grown for days, because you have to calculate whether the hair is growing so it takes a number of days to see that change. The hair follicles are bathed in solutions and the hair follicles bathe continuously for a number of days. So, that’s not going to be the same situation as applying a shampoo that maybe, if you are very lucky on the scalp, for a couple of minutes.
01:31 Speaker 3: There is a rationale that you may be able to get chemicals to absorb through hair follicles, however, in genetic hair loss and this is certainly true of male pattern hair loss, the bit that is being influenced is right down at the bottom of the hair follicle, what’s called the hair bulb. So, anything applied to the surface has to be able to get right down to the hair bulb, and it has to stay there and exert an effect. It’s not just a case of breaking through the skin and being absorbed into blood vessels because that would just transport the caffeine away. It has to sit around that hair bulb for probably days and used to be a continuous thing, and that’s where we don’t have the science.
02:09 S3: So, I think there is science that shows that caffeine can stimulate hair growth in a dish. There is science that shows that caffeine can penetrate through the scalp and through hair follicles. What we don’t know is whether caffeine can actually get right down to a hair bulb, stay around the hair bulb, exert a beneficial effect that will cause hairs to grow longer and thicker. I certainly wouldn’t recommend buying it, thinking that you’re suddenly gonna go back 10 years and have a full head of hair. There may be some slight effect, but there are no real studies in humans evaluating the effect of these caffeine-based shampoos to promote hair growth in the long-term.
02:45 PF: Dr. Paul Farrant in whose house I suspect, you won’t find any caffeine enriched shampoos. Please do get in touch if there’s a health related issue that’s confusing you. You can e-mail me…
This post is about a rare disease that is often missed by doctors called Addison’s disease. To join the awareness raising International Rare Disease Day (28 February) and as part of a new “Living With” series this blog will be looking at individual diseases. They will then be given a special in-depth review. Below is a new video we have created, using a recent Healthcheck Radio 4 interview. It features an interview and a new book by Carol McKay and useful information about Addison’s Disease.
There is a full transcript of the interview at the bottom of the page.
Addison’s Disease is a rare autoimmune condition that effects only 4 in every 10,000 people. There are currently around 8000 people in the UK who suffer from Addison’s Disease. Thanks to modern drugs, the condition is easier to deal with.
The main issue with Addison’s Disease is diagnosing it quickly. Unfortunately many people can go for years without a diagnosis. Symptoms often have to become very severe before it is identified by a Doctor.
Addison’s Disease Symptoms
Many people who are diagnosed with Addison’s Disease often complain of feeling unwell for many years before diagnosis.
Some of the signs of the disease can be like many ordinary problems of a busy modern life or much less dangerous illnesses. People find themselves being misdiagnosed.
At first a feeling of tiredness and weakness is the most obvious sign of the illness. With the hectic lifestyles people have nowadays it is easy to ignore these symptoms as just a part of everyday life.
However for some the tiredness can become overwhelming. So much so that it can negatively effect the way they lead their lives. This can impact upon their ability to go about everyday tasks.
Addison’s Disease can cause a “tanned” look to skin.
Another commonly misdiagnosed symptom on Addison’s Disease is a lack of appetite. With the hustle-bustle of modern living it is easy to skip lunch or not find the time to eat a meal in the evening. However with Addison’s Disease people suffer a distinct lack of appetite that can cause severe weight loss. They also find they crave salty snacks and foods and often add extra salt to dishes at meal times.
Addison’s Disease can also cause changes in the pigmentation of the skin. This is seen as darker patches of skin in various areas of the body.
Below is a list of the most common symptoms of Addison’s Disease:
Fatigue – feeling unmotivated and lacking energy
Lethargy – feeling sleepy and almost drowsy
Lack of appetite – leading to weight-loss
Low mood – feeling irritable and mildly depressed
Muscle weakness – lacking strength and energy
Changes in diet – craving salty foods and an increased thirst – leading to needing to urinate more often
Low blood sugar
Low blood pressure
More information about symptoms can be found on the NHS website.
Addison’s Disease Treatments
Keeping up-to-date with medication is vital for keeping the Addison’s Disease under control.
The rarity of this disease can make it difficult for doctors to diagnose Addison’s straight away. However once a diagnosis is in place treatment is relatively simple and straightforward.
The main treatment for Addison’s Disease is to replace lost hormones. This is usually given in the form of corticosteroid. This is a steroid therapy which will have to be continued for life. The steroid is usually taken twice a day in tablet form. Once the diagnosis and treatment is in place many find their symptoms disappear completely. This allows those with Addison’s Disease to carry on a healthy and normal life.
Medical bracelets are an everyday essential for piece of mind.
Even though the treatment of Addison’s Disease is simple, it is important that you continue to take your medication as directed. Finding yourself in a situation where you can not access your medication can be very serious. That is why it is important that you carry your medication with you everywhere. It is a good idea to pack extra tablets if you are going on holiday and to keep them safe in your hand luggage.
If you are unable to access your medication or are unable to take it yourself, medibands and medical alert bracelets can provide extra piece of mind. These medical alert bracelets are relatively cheap yet could be priceless in an emergency situation. Also available are digital/electronic, waterproof MediRead bands that are scanned with an app, and can store more complex information about your health and conditions, such as your name, GP details, emergency contact numbers, medications, and more.
Addison’s Disease Home Remedies
Some home remedies can provide comfort and relief to muscle pain caused by Addison’s. Keeping to a healthy diet is always recommended for good health, and even more so with Addison’s Disease. Ensuring you stick to your five a day can boost energy levels. Also drinking plenty of water can go some way to stop the feeling of tiredness and lethargy.
Massage
It has been noted that massage can help the muscular and joint pain cause by Addison’s Disease. It is best to avoid massages that are intense or involve stretching. However more gentle massage techniques can prove helpful. Taking the time to visit a specialist in massage for muscular conditions may not only help to relieve pain, but also help you to de-stress.
Liquorice that contains liquorice root has the ingredient glycyrrhizinic acid in it that may help in Addison’s disease because it can lower potassium, increase blood pressure, and boost mineral corticoid levels. Not all licorice-type sweets contain licorice root extract or glycyrrhizinic acid and so do not work in the same way. There are over-the-counter preparations of liquorice root extract available in the form of lozenges or in tea.
Licorice may help the steroid Cortisone to work
Anything that stops the body breaking down Cortisone, the main treatment for Addison’s disease can help. Glycyrrhizinic acid from licorice has been found by researchers to do this. It has long been a herbal remedy for the disease. Research has found it inhibits an enzyme responsible for inactivating cortisol in the kidney. Eating licorice makes the cortisol in the blood last for longer. A review in “Experimental and Clinical Endocrinology” describes a case study in which licorice had an “excellent” and prolonged effect in Addison’s disease and argued that licorice therapy should be used in the treatment of this disease. Researchers also found grapefruit can have a beneficial effect.
Living with Addison’s Disease before diagnosis can be life-threatening and life-changing. However once a diagnosis is in place many people feel they can finally continue on with their life as normal.
The most important aspect of managing Addison’s Disease is ensuring the correct medication is taken daily. Keeping on top of your condition and the dosage of medication is also very important. Although the initial dosage prescribed can solve most symptoms straight away, over time this may change.
That is why it is important that those with Addison’s Disease make regular visits to their GP for check-ups. As Addison’s is an auto-immune disease, it can lead to the development of related conditions such as hypothyroidism and diabetes.
More information on living with Addison’s Disease can be found here.
Carol McKay’s new e-book compiles stories of Addison’s Disease patients from around the world.
In Carol McKay’s new e-book entitled “Second Chances: True Stories of Living with Addison’s Disease“, she compiles the stories of Addison’s Disease sufferers from around the world.
Most notably is the account of Hilary Richardson – a Canadian-born Addison’s sufferer who was only 10 years old when she was diagnosed back in 1955.
At this time, it was almost impossible to obtain the necessary hormone replacement therapy in tablet form. Instead, her father would have to purchase powdered pigs’ glands for her to take to keep her condition stable.
Thankfully due to modern science, hormone replacement therapy is now cost effective and available in tablet form.
More books about living with Addison’s Disease:
Addison’s Disease in Dogs
Lastly, Addison’s Disease can also effect dogs. The disease causes very similar symptoms as it does with humans. Weakness, vomiting and lack of appetite are usually the symptoms that dog owners notice first. However, it can be even harder to detect in canines than in humans. Addison’s in dogs can go undiagnosed for many years, only being discovered once the dog is in very poor health.
If the disease is discovered early enough, it can be treated with steroids however it is best for the dog to avoid stressful situations to stop further flare-ups.
Carol McKay True Stories of Living with Addison’s Disease.
As mentioned in the video, a new book has been compiled with many real life stories about people with the disease. It has been reviewed on Amazon:
Reviews of Carol McKay’s new e-book:
This book was recommended on the Addison self-help web site. The true stories of fellow sufferers is fascinating and eye opening in to the good and bad side of the medical profession and how we as sufferers of this disease cope day-to-day.
Rose_claudette@hotmail
I read this whilst still in hospital coming to terms with my diagnosis. I couldn’t recommend it highly enough, well worth a read early on – MissLean
To find out more about Addison’s Disease and support groups we recommend visiting Carol McKay’s Facebook and Blog. If you can suggest other useful groups, blogs or resources lease leave a comment in the box below. If you’d like to help us create another post about an illness that you would like to help raise awareness of, please get in touch.
Transcript of Radio 4 Interview
00:00 Claudia Hammond: Hello, I’m Claudia Hammond and this is Health Check from the BBC. On today’s program, a rare condition which often isn’t diagnosed until it’s an emergency.
00:09 Carol McKay: Because it’s quite a rare disease, doctors don’t have it at the forefront of their mind when they are checking you and they think you’re all right, and then suddenly, you have a catastrophic collapse, your blood pressure is low, blood sugar is low. And you become very, very seriously ill.
00:25 CH: We hear experiences of Addison’s disease from around the world. When you go to your family doctor to find out what’s wrong with you, they’ll listen to your symptoms, examine you and then order any test they might need. But some conditions, especially when they are rare, are harder to diagnose than others. And with Addison’s disease, which only affects four in every 10,000 people, many don’t discover they’ve got it until it’s an emergency. It’s an autoimmune disease that disrupts the production of hormones by the adrenal glands and although the condition is life long, it is treatable with steroids. When Carol McKay was faced with the condition, she used social networking to find out how other people managed. The result is a an ebook called “Second Chances”, where patients from Belgium to South Africa and Australia to Canada recount their stories of living with Addison’s disease. When I spoke to Carol, she told me how she eventually realized what was the matter with her.
01:21 CM: I knew I had been not well for about a year. I felt anaemic, I had no energy. I was carrying on with my life, but I just had no energy. I went to the doctor to get checked to see if I had anemia or something else, and they did a few blood test and didn’t pick anything up. They were looking for thyroid and other things like that, because if you have one autoimmune disease, you are more likely to have another one. And I have Celiac disease, which is an autoimmune disease. So, they were looking for things, but didn’t see them. And then, a few months later, I was checked for my blood pressure and it was surprisingly low, but not dangerously low at that stage. So, again it didn’t ring any bells with the doctor. And then one weekend, I got a tummy bug, and my body just couldn’t come back from that and I was losing feeling in my arms and legs and in my lower jaw. And I was taken to hospital and fortunately, the medical stuff there recognized it and I was treated very quickly. It’s a very simple disease to treat because it’s like thyroid, you need replacement hormones.
02:26 CH: And looking at some of the experiences that people recount in your book, they do seem to be often, almost quite close to death by the time they get to diagnosis or certainly very seriously ill and… I was struck by the story of Jasmine, who is from the UK, and she was diagnosed just 12 days after her second baby being born, which must have been an appalling situation.
02:48 CM: Yeah, she’s wonderful. And her story is scary, but it’s actually really uplifting because… Well, she had suffered terribly. It was her second pregnancy. She knew what to expect in her pregnancy. But this one was really bad, she just felt really awful. And then after the baby was born, she was still really, really exhausted, more tired than she thought she should have been. But what’s uplifting about Jasmine’s story is that her doctor thought about her after she had been to see her, and actually turned up at her door and said, “Look, we’re really concerned. I’ve looked at your blood results. Please go to the hospital tomorrow morning and get checked out.” And then an hour later, she actually phoned, the doctor was on her way home, and she had suddenly realized. The Addison’s light bulb came onto her head, and she thought, “Oh, that’s what it is.” And that’s what saved Jasmine’s life.
03:39 CH: So, she was lucky that she had such a good doctor…
03:40 CM: She was…
03:41 CH: She suddenly made that connection and guessed what it was.
03:43 CM: She was very lucky.
03:45 CH: What made you want to collect together all these stories and publish them as an ebook?
03:51 CM: Well, I was very shocked by having my own diagnosis, because it’s quite rare. I needed to hear how other people had coped with it. So, I joined the Addison’s Disease self-help group, which is a charity in the UK and I found a lot of support from them. I also found support from Facebook. I’m a writer and I teach creative writing, and therefore, I wanted the whole story. I liked to hear what led up to it, how had they coped with the diagnosis and how they had a normal life afterwards? So, I set about to compile, I got 16, including my own, 16 stories. And they came from the States, Canada, Belgium, the UK, South Africa, Australia, South Korea. And I was really, really pleased to hear all these different stories. Everybody’s different, but they all, as you said, most of them were very close to death. It helped me, reading them, and I hope it helps other Addison’s sufferers, but it also raises awareness, and that’s really important to me.
04:53 CH: One of the stories is from Hilary, and she lives in Canada and was diagnosed right back in 1955, and she was only 10 years old.
05:03 Speaker 3: For some time, I had been adding teaspoonfuls of salt to every meal. I also ate very meagrely. Not only was I scrawny, but winter or summer, my skin was a dark color which looked odd with my fair hair. “Your elbows and knees are still dirty, you haven’t scrubbed them well enough,” my mother would complain. Little did she realize that the dark skin, the craving for salt, and the reluctance to eat were all symptoms of Addison’s disease. I was often ill and had missed a lot of school. My doctor thought a routine tonsillectomy might help, but I didn’t come around from the anaesthetic. It was after dark on Tuesday evening, when an internal medicine specialist climbed the grey limestone steps of the hospital. I’d been in a coma for more than three days, and had not moved nor opened my eyes since my operation. The specialist hooked up an IV containing a different substance to see what would happen. This is how I obtained my diagnosis.
05:58 S3: In 1949, Cortisone in pill form was produced commercially. But in 1955, in our small town in Canada, we couldn’t get these tablets. Treatment for me was desiccated pig’s adrenals. Every week, my father and I would go to the home of a man who had obtained the adrenals from a slaughter house. We carried the precious brownish grey powder home. The quality of the material varied week to week. Sometimes it worked very well and sometimes hardly at all. Luckily, within a year, my father was able to obtain hydrocortisone pills on a trip to the US. And before long, pills became available in Canada as well and my treatment now seemed very easy.
06:37 CH: So, quite a dramatic start for Hilary there in finding out that she got the disease and what happened to her.
06:44 CM: Yes. She was lucky. And if she’d been born 10 years earlier, she would probably have died. People still do die nowadays, even in the developed nations, they still die from it because it’s not picked up in time. And I’m sure there must be people all around the world who don’t have access to modern medicine easily who still suffer from it, but the pills themselves are fairly inexpensive.
07:07 CH: So, it’s more about the awareness of the disease than the pills themselves and access to those.
07:10 CM: Exactly. Yes.
07:11 CH: It’s that people have gotta get that diagnosis somehow.
07:14 S3: Yes.
07:15 CH: And what impact has it had on you life now that it is well controlled for you?
07:20 CM: It’s well controlled, but I still don’t have a lot of energy. For example, to come to this interview today, I had to take an increased dose of my medicine to cope with the stress.
07:30 CH: Really? That’s quite interesting.
07:32 CM: Yeah.
07:32 CH: So, you’ve got to plan in advance when you think you’re gonna be stressed, which…
07:35 CM: Yes.
07:35 CH: You can do if it’s an interview ’cause that’s arranged in advance. But everyday life’s not quite like that, is it?
07:40 CM: No. Because even a simple bump in a car, not even a serious bump, but something like that can cause the body to go into shock.
07:49 CH: And then what would happen to you? So if you hadn’t touched your dose today and were then feeling anxious, what would happen?
07:54 CM: It would affect my blood pressure and my blood sugar and I would start to get weak and collapse. In a more serious case, if I fell and broke my ankle, for example…
08:03 CH: Yeah.
08:04 CM: Then, I carry an emergency injection kit, so I have to give myself an intramuscular injection, to give myself a large dose, so that I don’t just fade away and die, really.
08:15 CH: Carol McKay and the latest version of her ebook of stories, “Second Chances”, is out this week. Next week I’ll be in Norway for the BBC and so Dr. Kevin Fong will be here…
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“, she compiles the stories of Addison’s Disease sufferers from around the world.