What I know about Addison's Disease

Question: What do Addison's Disease, Alzheimer's and Autism have in common? Answer: They are all listed on the National Organization of Rare Diseases. And although all of these are uncommon diseases, most people do have a general understanding of what Alzheimer's and Autism are. But ask a man on the street what Addison's disease is, and he'll likely scratch his head, and say "Huh?"

We need to change that.

Addison's is a disease of the adrenal glands. When the adrenal glands are damaged--because of an autoimmune disorder, for instance--they don't produce enough of the hormones cortisol or (sometimes) aldosterone. Cortisol helps the body respond to stress. It also helps maintain blood pressure and cardiovascular function, as well as the right levels of glucose--a form of sugar used for energy--in the blood. Aldosterone helps maintain blood pressure and water and salt balance in the body. When you don't have enough aldosterone, the kidneys don't regulate water and salt, so you lose both blood volume and pressure. http://endocrine.niddk.nih.gov/pubs/addison/addison.htm

Now, this is how undiagnosed Addison's disease played out for Annie. Up to the time she was almost 3, she was a normally developing child--walked, talked, sang and danced. But she also:

1. Took really long naps--because she didn't have enough cortisol for energy.

2. Had chronic constipation--because her kidneys didn't regulate her water and salt.

3. Loved pepperoni, goldfish, and french fries--because she was salt-depleted, and craved salty foods. She was also anorexic, and ate like a bird.

4. Would get very dehydrated with any kind of illness--enough to warrant multiple trips to the ER.

Other symptoms of Addison's disease are nausea, leg pain, stomach pain, depression or fearfulness, and skin color changes including a bronze tan or darkened skin folds, especially on the knuckles and toes. Annie had all of those symptoms, which got progressively worse in the year or so leading up to her Addisonian Crisis. Then one night when she was 3 1/2, we put her to bed with what we thought was a little cold, and the next morning we woke up to find her in the middle of cardiovascular collapse that resulted in a severe brain injury.

So why am I writing this again? For you! Because you or someone you know might have these symptoms in the future. And if that happens, you need to RUN--don't walk--to a doctor and tell them to test for Addison's Disease. People need to be aware of this disease--and think of it when they have a feeling of exhaustion that won't go away, or are depressed, or crave salty food, or have skin color changes. A classic case is someone who is skinny, has a bronze tan, and can't get out of bed in the morning. And Addison's disease can manifest at any age--old, young, teens--anytime.

The good news is that Annie's Addison's disease is easily treated with daily doses of hydrocortisone. It is doable and it is liveable! No one has to suffer a brain injury, and no one has to die of this. They just need to be aware of it to be tested for it, and treated for it--before it is too late.

In spite of the bad thing that happened to Annie, there are a number of good things that have come out of it. My hope is that one of the good things that comes for our experience is that someone is saved from suffering a brain injury, or dying from Addison's disease, and is diagnosed early.

Jean

"Praise the Lord, O my soul, and forget not all his benefits,

Who forgives all your sins and heals all your diseases,

Who redeems your life from the pit and crowns you with love and compassion,

Who satisfies your desires with good things so that your youth is renewed like the eagle's."

Psalm 103:2-5