Recently I was offered an opportunity to interview Jerome “the Bus” Bettis – NFL Hall of Famer for National Allergy & Asthma Awareness Month as he traveled to Washington D.C., on behalf of Sanofi US, (makers of Auvi-Q) with the Allergy & Asthma Network (now AAN, formerly AANMA), to share issues and initiatives with members of Congress and staffers on behalf of people with anaphylaxis and related conditions.
From Sanofi US: Jerome, and Sanofi US, the makers of Auvi-Q® (epinephrine injection, USP), are supporting this event and working with AAN to raise awareness about anaphylaxis, advocate for access to emergency epinephrine and to create awareness of Auvi-Q. This is Jerome’s first time going to The Hill to advocate for severe allergies and he is very excited to help in educating people. The event, now in its 18th year will take place May 5 through 8, 2015 as part of Allergy & Asthma Network’s 30th anniversary celebration.
Jerome was diagnosed with a severe allergy to shellfish more than 27 years ago when he was 14 years old. (Jerome talks about that in Coping magazine.) As I did some background reading on Jerome, I realized we are in the same generation. He was, like me, most likely was not given any kind of prescription for an epinephrine autoinjector upon diagnosis. Jerome confirmed this when we spoke, he didn't know epinephrine autoinjectors were even available. In fact Jerome says, he did not get any autoinjector device until the Auvi-Q.
NB: It was not standard practice until very recently. So those of us diagnosed in the 1970s, 1980s and even the 1990s simply did not have epinephrine autoinjectors. We were told: “avoid your allergen, take an antihistamine and get to a hospital”. That was it. I talk about this more in my book: Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011).
The landscape of food allergies has radically changed in that one aspect since were children: epinephrine autoinjectors are readily available and are widely prescribed. In fact epinephrine is now considered the most important first line of defense in an anaphylactic event.
Allergic Girl: How did you cope, knowing you were shellfish allergic but had no emergency medication to carry with you?
Jerome Bettis: I avoided all seafood and fish. I was so scared that I would have a reaction that I locked myself away. That was my main coping mechanism because I didn't have any type of epinephrine autoinjector. And I was really careful. The only thought was to get antihistamine if I ran into trouble, way into my adult years and I just stayed away from fish.
AG: How was the experience of getting your first Auvi-Q?
JB: Exhilarating. It opened me up to not be scared and try dishes because before I just wouldn't try anything. Now that I have the Auvi-Q with me I’m never concerned. It takes the paranoia away. In the past, if I had a problem I would think: “where is nearest drugstore in case I need an antihistamine?” Now with the Auvi-Q I feel more at ease with eating and dining out on the road.
AG: What motivational words would you have for athletic teens who have been recently diagnosed with food allergies, like you were at 14, and feeling nervous about “getting back into the game?”
JB: Don’t be afraid to be different, it’s okay. Don’t be afraid to answer the question about who you are, and that you have food allergies. The more people you tell about your food allergies, well, if they care about you they will care enough to know about you. I have friends who watch out for my shellfish allergy. They warn me about dishes before I even have a look at the menu.
Another thing. Having food allergies taught me that I needed to be conscious and careful of everything that I am putting into my body. From a really young age. And that was really helpful and a great lifelong skill to know.
AG: Having a life threatening experience, like anaphylaxis from food allergies or an uncontrolled asthma episode, is the catalyst for many people, young and old, to make life changes and take their health more seriously. (Jerome talks about a severe asthma attack during a 1997 football game and how that was a game changer for him.) What would you say to anyone right now about how and why they should get a jump on their health?
JB: For me, that situation was eye opening. I told myself that I had to become educated. That led me on the course on where I am today. I wanted to be proactive, be informed and create awareness around food allergies. Because I did not know there were options available for years and years like Auvi-Q. There are now options for all of us with food allergies. You don't have to be like me not knowing that these medicines are available.
AG: What might you say, man to man, to other young men with food allergies about how they can take care of both their health and their independence?
JB: Men, we think we’re invincible or immune – that anaphylaxis will never happen to me. I would tell any young man: This is life threatening. You need to have an action plan. If you don’t have a plan you will be in serious trouble if you have anaphylaxis. You’re prepared about everything else, you need to prepare for this.
I have a five point plan:
--Avoid the allergen.
--Have two epinephrine autoinjector devices.
--make sure that people that are with you, that they know that you are allergic. And that they know how to help you.
-Practice with an epinephrine autoinjector trainer.
--If you use your epinephrine autoinjector, that is not the end of situation. You need to seek emergency medical attention.
AG: Here’s a question from a food allergy mother via my Allergic Girl Facebook page: What would you say to young kids that think their dreams are limited because of their food allergy?
JB: I would say that your dreams do not have to be dashed because of food allergies. You can live life to the fullest as long as you have an anaphylaxis plan.
AG: Here’s another question from a food allergy mother via my Allergic Girl Facebook page: How to you handle traveling?
JB: I have two Auvi-Q devices with me at all times that allows me to travel without the fear of anaphylaxis. Be diligent about your food allergies and avoid a place that has your allergens; for me that’s a seafood restaurant. Anytime time I travel I tell everyone around me about my food allergy. But as you cannot be 100 certain have your two Auvi-Q devices with you at all times.
Here's Jerome playbook with many helpful hints and lifestyle strategies about stay safe and having fun while managing risk.
Auvi-Q also offers a $0 co-pay for their devices. Go to their website for more information.
Thank you, Jerome and Auvi-Q!