Awareness

Jon

Myalgic Encephalopathy (ME) Awareness Week

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bedMay 11 to 17 is Myalgic Encephalopathy/Encephalomyelitis (ME) Awareness Week. ME, also known as chronic fatigue syndrome (CFS), or ME/CFS, post viral fatigue syndrome (PVFS) or CFIDS – Chronic Fatigue immune Dysfunction Syndrome. These terms all refer to the same condition, but if just naming a condition is that complicated, clearly the illness itself must be complicated too. And indeed, it is.
 
ME/CFS is often onset by a virus—after the virus should be completely gone, unrelenting fatigue, pain, sleep issues, memory issues, and often, gastrointestinal issues, remain. It can also be linked to surgery or an accident—many ME/CFS patients can pinpoint the exact day their symptoms started, as my friend Ryan states in his documentary Forgotten Plague, while others may have a slower, more gradual onset [1. 2]. ME/CFS can be “mild” to severe—some people recover or go through relapsing/remitting periods of exhaustion and near normal energy, while others remain bed-bound for most or all of the day for years. 
 
Treatment is individualized for each patient, and there is no standard treatment. Treatments that may work well for one person with ME/CFS may be ineffective or even harmful to others. [1] Adequate rest is the core treatment. [1] Graded exercise therapy may gradually help people with ME/CFS be able to carry out increasing amounts of physical activity, cognitive behaviour therapy may assist in adjusting to the changes related to a ME/CFS diagnosis. [3] Activity adjustment, some medicines including antidepressants if needed, decreasing caffeine and alcohol intake, even vitamin therapy may also help. [3, 2]
 
While ME/CFS is not all that common, 250,000 people in the UK (less than a third of a percent) have the syndrome. [3.1] If you know someone with ME/CFS, ask them how you can help support them, and how you can help advocate for more research to be done for ME/CFS. If you have ME/CFS, wearing a medical ID bracelet or necklace for chronic fatigue may help in an emergency. 
Kerri

National Stop Snoring Week: A nuisance or a health problem?

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In March, we celebrated Sleep Awareness Month on our My Identity Doctor United States blog, and the importance of sleep on our health. Now that we have reached the last week of April, it’s National Stop Snoring Week here in the UK! Often, we see (or hear!) snoring as just another nuisance—after all, it is irritating when your partner or hotel roommate is a snorer, isn’t it? However, snoring can be a sign of other medical issues—or, nothing at all—so it is important to get checked out!
I have two stories of people in my life who have seen a doctor about snoring, and each hpillows-1031079_640ad different results—this is why snoring is nothing to brush off, however, also nothing to lose sleep over! (Okay, bad pun!)
A couple years ago, a friend was at a tournament sharing a room with other athletes and his coach. The coach was also a doctor, and he told my friend that during the night it had sounded as if his breathing was stopping, and that he should see someone to get evaluated. My friend had a sleep study done, and it was determined that his snoring and breathing issues were caused by sleep apnea. For about two years now, he has used a CPAP machine at night, and no longer has scary attacks when he wakes up after not breathing. A bonus to this? He also does not snore anymore—I was surprised as well, just how very quiet his CPAP machine is! It is even quieter than a central heating or cooling system kicking in!
Several years ago, someone I know finally went to the doctor about her snoring after years. She was referred to an Ear Nose and Throat specialist (ENT), who after a quick physical examination of her throat, simply informed her that she has an enlarged uvula (which hangs down from the top of the “soft palate” in the mouth—if you reach your tongue back you may be able to feel your soft palate!). This is not in itself dangerous, but it means that her airway becomes narrower during sleep causing snoring. The doctor said that there was no guarantee surgery would help, and sent her on her way—simple as that!
Other causes of snoring include sinus issues which may be easily treated with nasal sprays, or even simply your sleeping position, in which case your doctor may recommend a mouth guard of sorts or a jaw strap to keep your jaw better aligned to prevent snoring. So, snoring may not always be a sign of something sinister, which means it is important to get things checked out! If you have sleep apnea or another sleep disorder, medical ID jewelry can be important—but in all cases, it is important to get snoring checked out, for peace of mind and a better night sleep!
Kerri

Purple Day for Epilepsy: 26 March

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purple ribbon sketch with Purple Day 25/03 written on top

Purple Day for Epilepsy artwork by timeywimeystuff13 on DeviantArt

While seizures can be scary, knowing what you are dealing with can help. Epilepsy is a neurological disorder that causes seizures, and it affects about 1 in 100 people in the UK. [1] A seizure is the result a sudden burst of electrical pulses in the brain which cause muscles to contract and release involuntarily—epilepsy can onset at any age. [2]  While epilepsy can occur after another medical problem—such as a traumatic brain injury, an infection (like meningitis) that affects the brain, or stroke—as well as if a baby is oxygen deprived during birth—about half the time, doctors do not know what causes a person’s epilepsy [1]

It can be scary to witness someone having a seizure. To learn more about what to do if someone you know, or encounter, is having a seizure, check out this link to Epilepsy First Aid from Epilepsy UK. It is most important to ensure the person is safe, and depending on what type of seizure, that they do not injure themselves. Being a source of comfort and providing care while a person comes out of a seizure is also an important role, to alleviate any confusion that they may be experiencing or questions they may have about what happened. There are many different types of seizures, so if you know someone with epilepsy, they may be able to tell you what to look out for, as seizures are not always of the tonic-clonic (formerly known as “grand mal”) type. You can learn more about different types of seizures from the Epilepsy First Aid link above, or from Epilepsy UK’s website.
People with epilepsy usually take medicines to decrease their seizures—sometimes when people do not respond to the medication, they may require surgery on their brain or vagus nerve which has a role in seizures. [1] Mainly for children, a special diet may assist in decreasing the frequency of seizures. [1] this is something that has been helpful for Caitie, a young woman with epilepsy that we interviewed on the US My Identity Doctor blog last year. Be sure to check it out to learn more about how it might affect someone on a personal level.
 
No matter what type of seizures you have, wearing an epilepsy medical bracelet or necklace can be important. Purple is the colour of epilepsy awareness, and we have lot of purple medical awareness jewelry that can keep you safe and help raise awareness of epilepsy at the same time.  World Purple Day for Epilepsy is March 26, so wear purple to show your support for those living with epilepsy.
Kerri

World Down Syndrome Day: What an Extra Chromosome Means

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As a coach with Special Olympics, I’m lucky to know a number of kids (and a few adults from other times in my life) who live with Down Syndrome. Down Syndrome [DS] is a genetic condition that results in an extra copy of chromosome 21—for this reason, Dodifferent coloured chromosomeswn Syndrome is sometimes referred to as Trisomy 21—three chromosomes instead of just 2.
In the UK, 1 in 1000 people will be born with Down syndrome. [1] Down syndrome is not a disease, and while it can affect both the body and the brain (primarily the thought processes associated with learning). In the past, people with Down Syndrome did not have as long life expectancies as they do now, but Down Syndrome UK reports that most people with Down Syndrome live to their 50s or 60s, and some even into their 70s. [1]
Each person with Down Syndrome is different, and there is no “personality type” that people with DS automatically have—while people often think people with DS are always happy or smiling, of course this is not always the case! Think of the people around you who do not have DS—the majority of them are probably happy a lot of the time too, aren’t they? People with DS can have decreased intelligence in some cases, but all people with Down Syndrome have strengths that simply need to be brought out—sometimes, people with DS are of average (or above average!) intelligence, which is why it is always important to not make assumptions. People with DS have a characteristic face shape that is round, with somewhat flat facial features and almond-shaped eyes, and are often of short stature and carry more body weight.
People with DS often have abnormally flexible joints and low muscle tone; some people with DS have what is known as “atlanto-axial [joint]l instability” which simply means a joint in his or her neck is unstable because of a loose ligament. In some cases, this may limit some activities a person with DS is able to do, such as gymnastics, diving, stretching, or climbing. For the most part, people with DS or their caregivers will be aware of atlanto-axial instability and what activities may pose more risk for them. Other problems that can result form Down Syndrome include heart defects, hearing loss, and speech problems (once again, likely attributed to muscle tone issues). People with DS may require different surgeries or therapies (such as speech, occupational or physical therapy). Because of other medical issues, a medical ID bracelet or necklace to identify these concerns, such as heart or hearing problems, should be considered..
To learn more about Down Syndrome, check out our interviews on the My Identity Doctor US blog from last year, with Holli and her mom, Brenda, about life with Down Syndrome.
Kerri

More than heart attacks: February is Heart Month Worldwide

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February is Heart Month worldwide. While heart attacks and cardiovascular disease prevention in particular may be what topics spring to mind this time of year, there are other types of heart disease to consider that may not be as much in the forefront of the awareness spotlight as February comes to a close.
Of course, taking the many steps—exercise, good nutrition, and regular medical care including blood pressure and heart checkups—to prevent heart disease or catch it early are very important. These are things we need to be aware of year-round, not just in February! However, there are other types of heart disease that go beyond the heart attack or cardiovascular arrest that springs to mind when we talk about heart disease.
Congenital heart defects (CHDs) are a type of heart problem that are present at birth. CHDs are not curable and may or may not be treatable with surgery or medication—some people have lifelong symptoms, need multiple surgeries or require a heart transplant; others—like myself—receive medical intervention. (In my case, I simply received a dose of medicine that prompted the hole that allows blood to bypass the unborn baby’s lungs to close as it should have). A young person is not usually the first person we think of when we hear heart disease, but 8 in 1000 babies born in the UK have a CHD [1]. 250,000 adults in the UK live with a CHD [1]. Most people with congenital heart defects should wear a medical ID bracelet or necklace identifying their CHD.
Other types of heart disease include genetic diseases, cardiomyopathy [2] (weakening of the heart muscle that makes it have to work very hard to continue to pump oxygenated blood around the body), angina (pain in the chest that may or may not precipitate a heart attack), heart failure (from a variety of causes, including heart attack, CHD, heart valve or rhythm problems—arrhythmias), high blood pressure, and more [2]. Not all of these conditions can be prevented, however, the better health you are in, the better chances you have of making a strong recovery in the event you are affected by heart disease. This is why the steps to prevention are so important. A friend of mine’s dad had a major heart attack several years ago: he walked daily prior to his heart attack, and got to the hospital as quickly as possible (especially given he was on the highway!) once he realized something was not right. It was not long before he was again circling the block with his wife, going farther and farther as the weeks went on: to see him even just two years later, you would never guess what he had been through; the only sign is—if you know what to look for–the nitroglycerin that he is sure to carry in a leather pouch around his neck.
If you have heart disease, wearing a medical ID bracelet or necklace is usually recommended to ensure that your condition is treated correctly and promptly, either expediting or omitting unnecessary tests once your heart condition is communicated. If you are prescribed a blood thinner, blood thinner medical identification should be worn, such as a medical bracelet for warfarin, the most common anticoagulant (blood-clot stopper) in the UK [3]. You can check out our custom engraved medial ID bracelets at the My Identity Doctor shop—hand packed with lots of love by Burton the shop pup!
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