Wednesday, August 11, 2010

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.

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.


"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


Anonymous said...

Hi Jean
I read your post - and can absolutely relate, when someone asks about Zac and i explain what addisons is, their eyes just glaze over. However, with people like you and i educating the world maybe people will know. I think about Zac pre diagnosis all the time and the part you wrote about fearfulness - i never thought about that.. zac is having a tough time now, not sure if it's the age - he's 11 and pre puberty or is it the addisons or is it just him. He has horrible anxiety and can be very negative, always drudging about bad things in his life, relationships at school, negative experiences with classmates, teachers, etc. I'm going to print out this entry in your blog, if you don't mind and share it.
good bless you guys
love Barbara - aka Zac's mom

Jean said...

Hi Barbara--Print it out again, because I added "nausea" to the symptoms list--I almost forgot that severe nausea and vomiting often happen when the person is going into an Addisonian Crisis.

I'll e-mail you re: Zac. I have some ideas.

Take care.

Suzanna said...

Thanks for writing this! you are so right, people know so much about those other diseases, but Addison's is virtually unknown.

I think it's hard for people to imagine how it impacts our lives as well, because the symptoms can be ambiguous at times. Some days I just want someone to talk to face to face who really understands, and other times I barely think about it.

I really enjoy reading about Annie's progress. She is blessed to have such a devoted and loving mom. :) My mom has been my biggest advocate and listening ear since my diagnosis last year.

take care,

Anonymous said...

Hi Jean - I posted your comments to Facebook tonight, with a request to pass them on. I pray to God that someone reads them and is able to help another avoid an Addisonian crisis... thank you for posting it. Lisa

Jean said...

Thanks, Suzanna, for your kind remarks. I wish I could talk to someone face to face who gets it, too!! But, blogging buddies is the next best thing. :)

Lisa--Yes, it would be good if Annie's story could help someone, sometime, somewhere avoid what we've been through--simply by being aware of Addison's disease, and being diagnosed sooner rather than later. Thanks!

aunt rebecca said...

Open your mouth for the speechless,
In the cause of all who are appointed to die.
Open your mouth, judge righteously,
And plead the cause of the poor and needy.
Proverbs 31:8-9

the part of Proverbs 31 that we glide over

Marilyn said...

Great post, Jean!

Lana C. said...

Jean, you are too young to be this wise!! It means you have been through TOO much already, but you are such a blessing to others. Thanks for taking the time to write such wonderful accounts of your experiences. I have Addison's and it has helped me tremendously to read straight-forward accounts of the seriousness of this disease. I do believe it can help others to confront how deeply it can impact a life and a family. From Texas to you - I give thanks!
Lana C.