To give you a sense of how widespread this thing is, The American College Health Association recently reported that there were 7,001 total suspected cases of H1N1 on college campuses as of September 4.
That was when the kids had just arrived to school. We are only in September — flu season hasn’t even really begun yet.
I’d heard flurries that people with epilepsy be more attentive to what is happening with H1N1, but I didn’t think we were more at risk.
I lived in my happy bubble of denial until the CDC released a report, which exposed a common denominator in more than 2/3 of the children who died as a result of the H1N1 virus in the US. Approximately 67% had “chronic high-risk medical conditions such as epilepsy.”
I gotta say I was surprised. I checked and double checked. And that’s when I found that AES, CURE, Epilepsy Foundation, Epilepsy Therapy Project and FACES have joined together in support of public awareness on H1N1 virus risks in children with epilepsy, in response to the new CDC data.
This CDC report ran in their Morbidity and Mortality publication and emphasized how important it is for parents and guardians of children with chronic medical conditions to consult with their physicians about obtaining vaccinations against H1N1.
According to the CDC H1N1 FAQ site: “CDC’s Advisory Committee on Immunization Practices (ACIP) has recommended that certain groups of the population receive the 2009 H1N1 vaccine when it first becomes available. These target groups include pregnant women, people who live with or care for children younger than 6 months of age, healthcare and emergency medical services personnel, persons between the ages of 6 months and 24 years old, and people ages of 25 through 64 years of age who are at higher risk for 2009 H1N1 because of chronic health disorders or compromised immune systems.
We do not expect that there will be a shortage of 2009 H1N1 vaccine, but availability and demand can be unpredictable. There is some possibility that initially the vaccine will be available in limited quantities. In this setting, the committee recommended that the following groups receive the vaccine before others: pregnant women, people who live with or care for children younger than 6 months of age, health care and emergency medical services personnel with direct patient contact, children 6 months through 4 years of age, and children 5 through 18 years of age who have chronic medical conditions.”
For additional information between H1N1 and Epilepsy you can visit any of the sites I have linked to above or you can follow the CDC tweets at: http://twitter.com/CDCemergency
‘Rare’ and ‘very uncommon’ are what patients hear from medical professionals when they ask the question, “Can I die from epilepsy?” But after having epilepsy for years, I just didn’t believe that the odds were in our favor, considering 3 Million people in the USA have it. So I did a little digging.
It didn’t take much. I quickly found that the AES considers ‘very uncommon’ to be approximately 45,000 deaths each year. According to the Epilepsy Foundation of America, about the same number of people die each year from seizures as die from either breast cancer or traffic accidents.
Yep, you read that right. Breast Cancer and Traffic Accidents. And really, how often are we walking to raise money for epilepsy or passing laws to fight for all those people dying from seizures?
Like I said the odds were not in our favor, there are more people in the USA (3 million) with epilepsy than there are people living with:
Autism (1.5 million) Parkinsons (1.5 million) MS (400,000)
Okay, so you know the secret. But what can you do? Well, start by talking about it. Below are some sites you can visit that are talking about epilepsy.
This fall, an emerging talent in the art world–and a woman with epilepsy–will have a solo exibition in Philadelphia.
Cathy Hozack on being an artist “I’ve had epilepsy since I was five. The seizures and strong medications made me tired, confused, depressed and out of touch with reality. Over time, parts of my memory have gotten worse, but I can concentrate when using watercolors. I pick up a brush and the problems no longer matter. What I learned in Color Theory class is ingrained in my mind forever – but I have forgotten your name already.
I express my strongest feelings on paper and canvas. How I record the world around me depends on my mood and on what is going through my mind. I want to show everyone how I see the world around us.”- Cathy Hozack, October 2008
To experience her art in person: Cathy Hozack – Solo Exhibition The Coffee Bar Radisson Plaza – Warwick Hotel 1701 Locust Street, Philadelphia, PA 19103
Opening Reception Wednesday, September 23, 6 to 8pm
Exhibition Dates September 16 through December 14, 2009 To see her work online visit cathyhozack.com
The best way to get the care you need is to be your own advocate. Living with epilepsy and taking medications that affect mood and thinking patterns, can degrade self esteem. This can take a toll on the willingness to speak up and say, “Hey, that’s not right!”, whatever ‘that’ may be.
There are times when it is important to let your doctor know about new side effects your medicine may be causing. Not only because it can negatively impact your quality of life but also those side effects can be doing more damage than you realize.
Then there are times when you may be having little seizures that seem like “nothing”. But since seizures beget seizures that means each seizure makes you more open to more seizures. It’s always worth mentioning.
Or it could be you just have a small question but you don’t want to “bother” the doctor between visits. Well, chances are you won’t. It may well be something that the administrative staff can handle and the doctor won’t even know you called.
Just think of it like going to a restaurant. You can go to the best restaurant in town, but if you don’t open your mouth and tell the staff what you want then you’ll be seated by the kitchen and wait for an hour to get cold food.
Silly analogy I know, but it can get that bad.
It just boils down to don’t feel bad about asking for what you want. Or for telling the doctor what you need. Remember you are paying for this service. If you keep that in mind it will help.