2nd Annual "Cupcakes For Annie" Adrenal Insufficiency Awareness Campaign

Last year, my friends at Adrenal Insufficiency United launched an awareness campaign called "Cupcakes for Annie." Anything involving cupcakes must be good, right? And easy. But what a difference a cupcake can make, if it helps people to THINK Addison's! So here's what it's all about:

WHAT: "Cupcakes for Annie" Adrenal Insufficiency Awareness Campaign

WHEN: April 1-13, 2013 

(to correspond to Annie's birthday, April 7, 

and the discoverer of Addison's Disease, Thomas Addison's birthday, April 2, 1793)

WHO? 

Addison's and all forms of adrenal insufficiency are rare, but there are at least 200,000 people in the United States who are affected. Many more are probably undiagnosed, like Annie was.

WHY?
Addison's is life-threatening in the event of illness, trauma, or injury, because if medicine isn't given within 30 minutes, a person in crisis could die. And ambulances typically don't have the emergency injection of Solu-Cortef on board that is required to save a person's life. The bottom line: the trip to the ER might not be fast enough. Adrenal Insufficiency United's goal is to have Solu-Cortef on board ALL ambulances by 2015.

AWARENESS SAVES LIVES 

Awareness of Addison's and adrenal insufficiency, and having the emergency injection of Solu-Cortef on ambulances saves lives. Solu-Cortef is cheap--usually under $10.00 per vial, and has a shelf-life of 5 years. All EMS technicians should have it in their tool boxes, and every emergency physician should be able to recognize the symptoms of Addison's and an adrenal crisis, which can include:

Bronze skin (especially on the skin creases or scars)

Dehydration

Fatigue, weakness, muscle aches

Low blood sugar

Low blood pressure, especially when standing

Stomach pain, nausea or vomiting  

Weight loss

HOW CAN YOU HELP?

1. Print out this "Cupcakes For Annie" flyer.

2. Bake, buy or ask your local bakery to donate (show them the flyer) a dozen cupcakes. (Pink cupcakes are preferable, but entirely optional!) 

3. Take the cupcakes to your local 1. fire station, 2. hospital, 3. church, or 4. school, and tell them about Addison's Disease.

4. Take a picture of your adventure.
5. Send it to me.

BONUS PRIZE 

Everyone who takes cupcakes to a fire station, hospital, church or school, takes a picture, and sends it to me by April 21, 2013, will have their story published on this blog and be entered to win a $50 Starbucks gift card. Pretty cool to be able to have your cupcake and coffee too, eh?
(Contest winner will be announced by April 30, 2013.)

So there you have it--all you need to know to make a difference for people with Addison's and adrenal insufficiency--like Annie.

Happy "Cupcakes for Annie" Adrenal Insufficiency Awareness-Making!

Jean

Annie's Adrenal Crisis

"Those who don't know history are destined to repeat it." Edmund Burke

In light of those words of wisdom, let me tell you Annie's story again. My thought is that if you or someone you know ever shows symptoms like Annie had, you will run to the doctor--preferably a diligent endocrinologist--and avoid the tragedy that happened to us.

Six years ago today, on January 21, 2007, my three and a half year old daughter, Annie, suffered an adrenal crisis that resulted in a severe, hypoxic brain injury. We put her to bed with a little cold, and the next morning we found her blue, eyes staring straight ahead, teeth clenched, and arms pulled up to her chest. She was in an on-going seizure after her blood pressure dropped and her blood sugar had dropped, causing her to go into cardiovascular collapse.

In the year prior, beginning in January 2006, she had had multiple episodes of dehydration, stomach pain, nausea and vomiting. She had been hospitalized for three days, we had taken her into the ER three times, and to the doctor many times in between. No one diagnosed her with Addison's disease, or adrenal insufficiency. No one referred us to an endocrinologist.

She took three hour naps. She was thin. She craved salty Goldfish, pepperoni, and pizza. She also began to be fearful of little things like walking down steps alone--things she had previously been doing fine by herself. And her skin got progressively darker until she had a tan that prompted a friend to start calling her "Malibu Barbie."

Then one night in January I put her to bed with a cold--and she almost died as she slept.

Addison's Disease is a disease of the adrenal glands, and results in adrenal insufficiency, or AI. AI can also be caused by secondary problems such as tumors of the pituitary gland, or adrenal glands, or injury. The adrenal glands produce cortisol, which is necessary for your body to fight illness and stress. If your adrenal glands don't work, you are at risk of an adrenal crisis--a life-threatening event.

The treatment for Addison's, or adrenal insufficiency is simple: hydrocortisone tablets, usually taken three times a day, to mimic the way our adrenal glands supply our bodies with cortisol. During times of illness or stress, the dose is increased double or triple to mimic what the body does naturally to fight off infection. In times of crisis, an injection of liquid cortisol (Solu-Cortef) is given.

Annie was saved from dying that morning, but not until after she had already sustained a catastrophic brain injury. She lived for four years without ever regaining the ability to walk independently, say more than 5 words, or eat. And her brain function went from precocious 3 1/2 year old to infant--overnight. Annie passed away on March 25, 2011 of complications of the flu. We grieve the loss of that blond-haired, pink-bowed sassy little girl, but are continually comforted that we will see her again in heaven soon.

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What does this all mean for you?

If you or someone you know has weakness, or gastrointestinal symptoms such as nausea, vomiting, weight loss, dehydration, and has unexplained darkening of skin color--think adrenal insufficiency. Adrenal insufficiency can develop at any age--young children, teens, adults--boys, girls, men or women. Get to a doctor--an endocrinologist--and insist on a simple cortisol test. It could save your life!

If you are a parent of a child diagnosed with adrenal insufficiency:

1. Be diligent in times of stress or illness. Trust your gut--if your child looks or acts the least bit sick, assume they need a stress dose of hydrocortisone.

2. Train family members, caregivers, teachers, and school nurses on stress-dosing and giving the emergency injection. Train them on recognizing the subtle signs that your child needs more hydrocortisone. Train them on what an adrenal crisis looks like for your child, and what may cause it.

3. Learn as I did that calling 911 is not a substitute for giving the emergency injection in a crisis. Driving to the ER is not a substitute for giving the injection. Every second counts. Get over your fear and queasiness and give the injection first and then go get help.

4. Join our Facebook group Parental Support for Adrenal Insufficient Children or see our Facebook page "Cupcakes for Annie"  and get support from other parents.

5. Finally--Read, read, read about AI. Learn about the subtleties of your child's brand of AI. You will become the expert on your kid. Be a bulldog advocate for them. Don't be pushed around by anyone who minimizes or brushes off what you know to be true.

Remember to learn from my history--Annie's history--and recognize the signs of adrenal insufficiency. If her story saves one life, it helps to redeem our loss.

Jean

Dusty's Race for Adrenal Insufficiency Awareness

My friend, Dusty Hardman, a runner who also has adrenal insufficiency, is doing a 500K race in July through the state of Tennessee, in the "Last Annual Vol-State Road Race." She is partnering with Adrenal Insufficiency United (AIU) to raise awareness of how to treat adrenal insufficiency in emergency situations. Dusty hosts the Addison's Support blog which contains a gold mine of information about AI that helped me immensely when I cared for Annie.

AIU's goal is to help fire-rescue departments adopt protocols to treat adrenal crises. An adrenal crisis can happen when a person with adrenal insufficiency gets sick, is injured, or has trauma of any kind. You can imagine how important it would be for a paramedic to have the training and medicine to treat this. However, as it stands now, very few states have protocols in place, and even more important, very few ambulances carry the liquid hydrocortisone injection (Solu-Cortef®) necessary to help a person in crisis.

The good news is, as the message has gotten out to paramedics and firefighters, the response has been overwhelmingly positive--they want to help make these changes! I had the opportunity to talk with a number of these good people at a conference a few weeks ago, and again, they're in the business of saving lives--and want to see changes made that will enable them to do just that. What was very helpful, too, is that they pointed us toward the people in their circles of influence who can help us achieve this goal.

So Dusty will be running, people will be giving, AIU will be sharing, and the fire-rescuers will be equipped and ready to save lives. How cool is that?

For more information, you can check out Dusty's website at Addison's Support.