Addison's Disease Support Group

Totally understand where you are coming from. Adrenal insufficiency and related problems are difficult to diagnose until you are almost on your deathbed. It comes on over a period of years but we don't put the clues together.

You will want to go to library or use computer to find out, and become an expert, in adrenal issues. There is a lot of information out there and most of it is pretty good.

Everyone has two small glands sitting above kidneys. Unless you are born without them or partial glands. These glands are important and provide hormones (cortisol) that is used by all the cells in your body. When the adrenal glands don't produce cortisol, there will be problems.

Adrenal problems can be caused by tumors in the pituitary gland (so often an MRI is done to rule that out); tuburculosis; your body producing antibodies and attacking your adrenal glands. Sometimes a person can have adrenal problems from taking steroids for a long period of time or taking steroids and having a sudden withdrawal from them. Whatever the reason, when one is diagnosed with adrenal problems, the remedy will be replacement steroids, watching diet (because steroid will make you gain weight even if you ate zero every day), getting some exercise, having family to love you through it. It is important to have an emergency kit with steroid in vial and needle in order to give yourself a shot in emergency situation. If your body encounters great stress (illness, emotional upset, or other physical stress), you may have to take extra pill. I have found that when I become emotionally upset (more than just being angry but something serious), I have to take an extra steroid pill. Flying on an airplane really upsets my system (something about the altitude) and I have to take extra steroid. It takes awhile to get the feel of your body but you have to be cognizant. Keep a daily journal of how you are feeling. Rate your energy level from 1 to 10. For a long time I took a journal to my doctor on a monthly basis tracking how many days I spent in bed versus up on my feet. You might see a pattern developing.

President Kennedy was the poster child for Addison's Disease. It is rare so not much is done about it as far as research. There are no adrenal transplants available so it is something that we have to reach out and learn from others.

There are some good books out there and I highly recommend Adrenal Fatigue. It talks about how the adrenals can become stressed over a period of time and begin to shut down little by little until they just stop.

This is not a death sentence, it can be a life sentence. I have learned more from my Addison's Disease than I have through any other event in my life. It gave me compassion for chronically ill people and it helped me reconnect with my family. I was a workaholic before Addison's. Now I truly know what is important. Addison's saved my life. Hope it does the same for you. God bless.

Thank you kyconnie for all of your comments about AD. I was diagnosed 6 years ago and my life has really changed. You know my Dr. said i wouldn't gain weight but taking steriods will make you gain weight no matter what you eat. I also know that the dr. told me i would lead a normal life with my medications, but anyone with AD knows that is not exactly true. I used to think it was just me but thank god for this website because i found out that most AD people have bad days.
I was told to take the H1N1 shot because i was high risk but it has made me very sick - this is the 3rd day of having a very bad chest cold. Now I know that it is a dead virus and it should not have made me sick be it is a huge coincidence that i would have the shot friday and wake up saturday very sick.

Thank you again for your explanation.

Hi thankyou for replying,she has been telling me she has been shopping today and her arms went numb,she couldnt lift them up,it just seens so complicated,i will be going to buy the book you mentioned tomorrow thankyou x

Katrina,

I'm very sorry to hear about your daugher's diagnosis. I was diagnosed at age 33. It was a life changing diagnosis, but I'm learning to live with it and lead a fullfilling life. I work full time, have a 2 yr old daughter, and generally have the energy to persue other interests. I have learned to manage my energy and that often means prioritizing tasks in my life to ensure the important ones get accomplished. Everything else can wait until tomorrow.

She can contact the National Adrenal Disease Foundation at 516.487.4992. They are also online at http://www.nadf.us/index.htm which your daughter should be able to easily access from a local library. They have support groups throughout the US. I would also recommend you print http://www.addisons.org.uk/info/ma... It is a very informative and comprehensive guide about living with AD.

Your daughter will also need to get a medical ID that states she has AD and is steroid dependent. NADF has an emergency card that she can carry in her wallet that gives emergency treatment information, if needed. AD is a rare disease and the medical field outside of endocrinology is not very familier with the disease; it is important your daughter become knowledgeable about this disease. Her life may depend on it one day.

thankyou all she is on the computer and will get her to join this group once again thanks