My son was born with many food and environmental allergies, and his immune system often seems...a little confused. It likes to throw us curve balls: reacting to things that should be totally safe for him, making him susceptible to every germ that floats through his school, and giving him asthma. He recently spent four days in the hospital after what I thought would be a quick visit to the ER for bronchitis. As it turned out, he was having a very severe asthma attack - but before that, we didn't even know he had asthma. Seeing him struggle to breathe was so scary. He was on oxygen and hooked up to random beeping machines for days. I never left his side.
For those of us who have children with severe allergies, it's very important that we protect them against the flu virus (and all viruses) because of their compromised immune systems. After contracting the flu, many people will experience fatigue, fever and some aches and pains but influenza can also result in more serious things like pneumonia, and even death. For someone like my son, these are very real threats. Higher-risk groups include kids under five (even healthy ones), pregnant women, and those over 65. For their sake, as well as my son's, my whole family gets the shot.
Even a minor cold can lead to major complications for our allergic kiddo, so when flu season approaches, we head to our doctor for our flu shots.
Herd immunity is something we strongly believe in, and the flu shot is the best defence against the flu. Generally, influenza vaccines offer about 60% protection when the vaccine and circulating strains are well matched, however, influenza vaccine effectiveness can vary from year to year. It is too early to predict with certainty if this year’s influenza vaccine will be a good match for circulating viruses. I know some will scoff at that, and many use the excuse that they've never gotten the flu, so they don't need the shot, but that's not how science works, unfortunately. The opportunity to avoid (or pass on) a very serious virus is enough for us to want to protect ourselves, and those around us.
In Canada, 10-20% of our population is likely to get sick with the flu, and it's estimated that more than 12,200 people are hospitalized each year for flu-related complications. The scariest fact? More than 3,500 will die of the flu. That's not inconsequential! And since kids run such a high risk of serious complications, we happily roll up our sleeves. It's not only kids like my allergic and asthmatic son who are at risk, it's all kids. It's your kid, your neighbour's kid, and the kids in our communities.
If you're wondering just how safe the flu shot is, please do your research. It won't make you sick. You do need a shot yearly. It is safe.
The free nasal spray flu vaccine is available for those between the ages of two and 17. This is fantastic news, right? My kids (and probably yours too!) are terrified of needles, so the nasal spray vaccine will make the whole process smoother for all of us. (Plus, I won't have to bribe my kids with new toys to get their needles without tears, hooray!)
The nasal spray flu vaccine will help offer broader protection against four flu viruses instead of three. The added protection comes against an additional B-strain of the flu virus, which affects children and youth more frequently than adults.
Kids can still get the needle version (and it will cover the same four strains), while the adult version of the vaccine will protect against three strains.
Without the vaccine, it's pretty difficult to protect ourselves against the flu. Germs from sneezes can travel up to six feet (gross!), and the flu virus can live on surfaces for up to eight hours (even grosser!). That means every doorknob, every shopping cart handle, every public space should be treated as suspect.
You can get your flu vaccines (both needle and nasal spray) at your health care provider's office (we have to make appointments for ours), public health offices and participating pharmacies in Ontario.
Stay healthy this flu season!
You know I'm all for protecting people with food allergies, but I think sometimes our fear takes precedence over reality. Food bans are a hot topic in the allergy community, and I've been on the receiving end of some hate over my hesitation to support them without question. There's actually little proof that blanket food bans really keep anaphylactic people safe: many experts feel they're ineffective. Giving people (kids, especially) a false sense of security is the last thing I want to do when anaphylaxis is a real threat. Of course, I also don't want a young child who cannot possibly comprehend anaphylaxis to be exposed to allergens, either. We work constantly to help our son (who is almost six-years-old) to learn about his allergies, and how to keep himself as safe as possible. People need to live their lives in a world filled with various allergens, and I just don't think it's reasonable to ban everything.
Over the years, my opinions about banning foods have changed a little. I still think that for young kids, bans in preschools, daycares and primary classes are a good idea. I don't think, though, that for older kids, it's necessary or even really possible. And so, is it realistic to expect the wider community to eliminate allergens, too? I know a lot of people are angry that peanuts are even sold still. Remember how irate everyone got when Tim Horton's started selling Nutella donuts? If we start banning peanuts, where will the accommodations end? There are life-threatening allergies to dairy, so maybe we should end ice cream altogether. And let's not forget eggs -- we should stop breakfast sandwich production. Honestly, maybe we should just stop growing peanuts altogether. That'll solve the problem, right?
I read that Hamilton, Ontario is considering banning peanuts from all city buildings and I just know that many in the allergy community will applaud this move, but I'm not sure it's a good one. Now, I have to give the local Hamilton government credit because they've been so proactive in their efforts to protect those with life-threatening allergies. Some Hamilton mall guards carry EpiPens (awesome!), and they've pushed for restaurants to all stock epinephrine auto-injectors (fantastic idea!), but I'm not sure that banning peanuts in all their city buildings is realistic. The reality is that we must teach our allergic kids to live with their allergens. Even Dr. Susan Waserman, one of the world's leading allergy researchers says, "Most risk is from ingestion. Just sitting beside somebody who is eating a peanut sandwich, if you don't touch them, touch the surfaces, don't share any of the stuff that's with them, if somebody is competent in managing those sorts of things, then probably eight years of age and up, in that ballpark, could be counted upon to do it."
I understand that the risk of anaphylaxis is terrifying; I live with that fear every time my son eats something I haven't prepared from scratch. Being the parent of an allergic child is so much more stressful than many people realize, but I cannot ban everything that's dangerous in my child's world. So, with Lysol wipes in hand, I venture out into the world with my small son. And what about those who can die from all those other foods? How far can we go to protect all people with life-threatening allergies?
The answers aren't easy. I don't want to risk anyone's life, but I also don't think it's truly possible to just expect the world to stop eating foods that are allergic to only a few. I really love that some sports stadiums offer nut-free areas, and I love even more that there are restaurants that understand the struggle, and are allergy-friendly. But this is a huge world, and I think that education will go a lot further than blanket bans.
What do you think?
We all know what hives are, don't we? Raised, itchy patches that can drive allergic people completely bonkers. Most of the time, hives are caused by an allergic reaction. And when that happens, antihistamines reduce the swelling, and the hives disappear within a fairly short amount of time. Some people, however, live their lives with what's known as Chronic Idiopathic Urticaria. Urticaria is the proper name for hives. CIU means the hives are long lasting (chronic), and have no known cause (idiopathic).
Although this is not an allergic condition, it's often mistaken for one, which is why I wanted to talk about it here.
Photo credit: Sue Hargrave
It isn't just an itch that sufferers of CIU have to experience. It's an itch that makes them want to tear off their skin, a burning pain that won't let up, and swelling that causes more pain. It's huge, unsightly, painful hives, sometimes covering their entire bodies. Triggers can be almost anything: from hot or cold temperatures to pressure to various activities, patients can never predict with consistency when they'll have a painful flare-up. It limits them physically, emotionally, and takes a large mental toll. Worst of all, most people around them don't understand just how awful the disease can be, so CIU patients often suffer alone, ashamed and frustrated.
I interviewed some patients with CIU to get an idea of just how life-altering this disease can be, and I wanted to share their stories here in the hopes of spreading awareness of the seriousness of this condition.
Sue Hargrave is the administrator of Chronic Urticaria Support Group (Private) on Facebook, and I met her in Zurich last spring. She's a wealth of knowledge and experience with regards to CIU, unfortunately because she's been suffering from it for twelve years now. Twelve. Due to daily complications such as severe facial angioedema (swelling), a body completely covered in hives, and painful joints from body swelling, Hargrave had to grudgingly leave behind a 32 year teaching career. Although her friends and family have been incredible support systems, Hargrave spends a lot of time on the Facebook support page, reaching out to others, and sharing her story. She's an incredibly vibrant, warm, wonderful woman, and it's so sad to know her life has been altered so greatly due to CIU. Where she once taught art classes, she now creates art that revolves around the idea of living with this disease. With a solid team of professionals (after being passed from one to another for many years), Hargrave now spends her time educating others about the disease and seeking new information, always, that may lead to some new treatment for her. Her advice to newly diagnosed patients is that there are medications that may help, and they're worth trying (though none have been a cure for her).
Photo credit: Sue Hargrave
People of any age can have CIU, and onset can be sudden - without warning. Many will spend many months, even years trying to identify a culprit, resting finally on a chronic idiopathic urticaria diagnosis only after many long, frustrating, and useless attempts at cleanses, clean eating, minimizing products used, and more.
For Stacey*, a young woman in California, CIU means she can no longer wear high heels or walk long distances. Pressure causes immense swelling which can last for days. This means no fitted clothing, no carrying heavy items (even grocery bags), no nights out with friends. Stacey feels trapped in her own body, unfairly limited as a young person whose life is ahead of her. She can't even wear jeans or enjoy social events without being in pain. For her, the pain is far worse than the aesthetics of the hives, because, she says, "it takes everything not to cry when walking on hive-covered feet, because it feels like walking on hot glass."
Even just making a fist can be torture some days for Stacey.
Bonny*, a student in Oxfordshire, UK had symptoms of CIU starting at age ten. Covered in unexplainable, itchy, painful hives, her school work suffered to the point where she had to drop out. The constant worry about when another flare-up would happen, or how her life may be affected by the disease resulted in anxiety, which further limits Becky's social life. The hives are so swollen and red, and no medications have worked for her. She's exhausted just having to explain to people why she can't do simple things like wash her hands in hot water, or walk up multiple flights of stairs -- all these things exacerbate her already painful condition.
photo credit: patient "Bonny"
Chronic Idiopathic Urticaria has different names across the world but the same symptoms. Often accompanied by angioedema (severe tissue swelling), CIU is often startling to see. Serious swelling of the face (especially eyes and lips) is frightening, and often patients are ashamed of the swelling and rashes. Hands and feet can swell to the point of being unusable, genitals swell, and even tongues and throats swell. Sometimes the swelling in a throat can obstruct breathing and require a trip to the hospital.
Photo credit: Sue Hargrave
One patient told me that in less than one year, she's become a totally different person from who she was before she was suddenly afflicted with CIU. She is shy, nervous, and suffers panic attacks whenever she has to leave the house. Her entire wardrobe has changed to accommodate her needs, and time outside her home is incredibly stressful because any air stimulation can cause a flare-up. She can't just sit and enjoy her kids' sports games -- rain and wind make that virtually impossible. Her moods swing, making her marriage rife with tension, and she had to walk away from a 16-year career.
CIU is a debilitating disease that almost nobody knows about, even doctors.
Stacey says dealing with doctors has been frustrating. "I have had a few doctors just throw medications at me, versus discussing a long-term plan. No one has really cared to get to a root cause." Being passed from a primary caregiver to pharmacists, rheumatologists, allergist and dermatologists is doing nothing to find answers for CIU patients as a general rule. For one Nova Scotia teen, medication does help, but it's incredibly expensive and not covered by her provincial health care coverage, and she has none of her own after having to drop out of university because of CIU.
When I asked patients with CIU what their biggest fears were about the disease, the answers broke my heart:
"Living with this for the rest of my life. That I'll never be "normal" again."
"That I could pass it on to a child."
"That I will never live up to my potential."
I can't imagine living with a chronic condition like this, without relief. I have dermatographia, but for the most part, it is easily covered up, and antihistamines work well to control it. For CIU, medications work for some, but don't seem to be the answer for everyone... mega doses of steroids, anti-inflammatories, beta-blockers and more are taken by patients, yet nothing is consistently helpful, so it's a constant trial-and-error process.
This very personal post about life with CIU is such a heartbreaking read, too. I cannot imagine not being able to cuddle my loved ones, or wear the clothes I want to wear, or do the things I want to do because of something like this.
If you think this is something you're dealing with, I encourage you to speak to your doctor. You can also seek out the support of the wonderful people in this group on Facebook, and find out more about Urticaria Day as well.
*Some names have been changed to maintain patients' privacy.