Disability

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

What is Encephalitis and Can You Spot It?

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The answer is, probably not! The tricky thing about the rare and serious condition encephalitis, in which the brain swells, is that it can look a lot like the flu [1]. It is more likely to affect the very young or very old, however, anyone can be affected. [1] Symptoms may look like the flu but do not always—if confusion or disorientation, personality or behaviour changes, difficulty speaking, muscle weakness or inability to move in some parts of the body, seizures or loss of consciousness occur, especially in the presence of flu-like symptoms, medical attention should be sought immediately. [1] Encephalitis might be caused by viruses, like herpes simplex or chicken pox, and more rarely, bacterial or fungal infections. An immune reaction in which the immune system attacks the brain causing it to become inflamed may also be the cause of encephalitis—or, the cause may not be able to be determined. [1] Encephalitis is NOT contagious, though in some areas, it may be preventable by keeping vaccines up to date including the MMR vaccine, and other travel-specific vaccines including the rabies vaccine when in areas with limited medical care access, the Japanese encephalitis vaccine for travellers visiting at-risk parts of Asia, the tick-borne encephalitis vaccine for travel in some parts of Europe (outside the UK). [1]
Encephalitis is treated similarly to many severe infections: antiviral medications, steroids to reduce swelling, immune system treatments if this is deemed to be the cause of the swelling, pain or fever reducers, seizure medications, antibiotics and anti-fungal medications, and respiratory support just as in severe flu cases, which may include need for a ventilator or oxygen [1]. Treatment depends on the severity and type of infection, and can range from days to weeks. [1] Even after the encephalitis has been treated, the symptoms may not completely go away. Some people may, with work, make a full recovery, but others may never completely recover. Some after-effects or complications of encephalitis include memory problems, personality and behavioural changes, executive function issues including issues with attention, concentration, problem solving and planning, seizures, and ongoing fatigue [1].
Most people do not know what encephalitis is, or do not know what it is until a family member or friend becomes affected. February 22 is World Encephalitis Day—and a reminder if “flu like symptoms” seem like they are too much to handle, it is time to visit A&E or call for an ambulance—it is best to be on the safe side, or receive treatment as early as possible. Those living with after-effects of encephalitis should consider wearing medical ID, especially if they experience memory loss, confusion, or seizures, for peace of mind.
Kerri

Tag your bag for the journey: Medical bag tags

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If you’re an avid traveler, you know the importance of keeping tags on your luggage. One trip, I could not for the life of me find a luggage tag in my house! Fortunately my suitcase made it successfully through both flights, but I can’t say I wasn’t just a tiny bit nervous because it seemed like I was tempting fate! But, how well do you identify your medical items as yours?
 

medical bag with red ID tag

Certain items, like blood glucose test kits, zip cases for medications, oxygen tanks or compressor bags and CPAP machines, wheelchairs or walkers, or nebulizer compressors are important, especially when travelling. Any bags that contain medical supplies should be readily identified so that if they are lost, the urgency to return them and their contents is known. Our red medical ID key chains also double as excellent bag tags. I have one attached to my nebulizer bag—if someone finds it somewhere and does not know what it is, they will at least know that it is medical equipment, and hopefully take it somewhere where they will find a way to contact me and return my supplies! 
 
Most of us are very careful with our medical equipment—but, especially in the hustle and bustle of travel, things happen. By outfitting your equipment or medication bag with a medical tag, such as our bright red ones, you can have the peace of mind that anybody who finds your bag can get it back to you. A tag can also help people identify where to find the medication that you might need if you cannot get to it yourself. Our tags come in both plastic and aluminum versions, as well as a red-emblem stainless steel version. While all of our products are light, I have the plastic red tag on my nebulizer bag—it’s low profile and stays out of my way, but is bright enough to see when needed. Since this small carry bag for my neb stays within my carry-on bag most of the time, I don’t test the tag’s durability too much; however, if you are really rough on your bag (like I am on my backpack!) you may prefer the aluminum version for your journeys.
 
And, unlike those those paper-insert plastic tags that sometimes only last one trip on your suitcase before the plastic cracks, these sturdy little tags will hold up to whatever you throw at them, just like the rest of our products. 
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