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Helen’s Story (Addison’s Disease)

Addison's Disease RibbonI had been ill for about 8 months and gradually getting worse. The doctors just thought I had a thyroid problem and gave me medication for that. In the end, I could hardly eat, got a strange tan, and then I went on holiday in May this year where I got very ill with vomiting, feeling very cold when it was 90 degrees outside, and having bad back pain. I was very dehydrated and could hardly walk by the time we arrived back in England.

My husband took me to A and E the following morning. Luckily, the doctors there were really good and diagnosed my condition quickly which I later found out was adrenal failure, otherwise known as Addison’s Disease – which is a life threatening illness. I was so lucky I reached the hospital in time and they injected the needed cortisone steriod into me. Now I have to take the medication daily for the rest of my life as without it I would not be here today.

I now realize I need to make the most of every day.

Helen
England
Submitted 7-18-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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12 comments

  1. Helen, your story is so like mine…Addison’s sucks. I am so glad you were diagnosed and have doctors who know the disease. Hang in there Girl!
    mo

    • Thanks Mo, It’s good to have friends in the same situation xxx

      • Helen, I’m so glad you were diagnosed so fast! I have Addisons Disease. Took nearly 2 years to diagnose me. I had the nausea, back, leg, joint, stomach pain, also migraines, no energy the list goes on! After seeing many Dr’s and being told it was all in my mind. My family Dr who never gave up on me asked me if i had been on a tanning bed. I had a suntan in January! He told me to wait till he checked a few things out, had me set up for the tests and within a week they knew what it was! When my levals came back the endo couldn’t believe i was still alive, and the only reason i was…. Steroid shots i’d been getting in my head for the migraines! My advice to everyone no matter what the illness NEVER give up if the Dr is not helping see someone else. And for people who know or see any of us AD people, we are not lazy or whiners anyone who lives with this disease as with many other diseases it takes courage to get out of bed every morning to try and live a normal life. I work 30 to 40 plus hours a week as a baker which is hard enough, but with Addison’s pretty good! Live every day with love, joy, fun and a smile, life is way to short to do otherwise. I control my disease, it does not control me!

        Shirlieann McCann
        A Scottish transplant in Texas!

        • I’m just diagnosed with addisons and would be glad of any advice, I’m scared and frightened and very unsure on life

          • Hi Shona, try not to be scared and frightened. It is a lot to take on when you are first diagnosed. My daughter was diagnosed in July 2013 (aged 19yrs) when she went into crisis, in fact it was much the same as Helen’s story at the top of the page. My daughter didn’t really want to know about what it all meant, especially as she had always been very sporty. Whereas I read and read and read so I could better understand how to support and enable. Over the months she has gradually increased her understanding and at times she does shed a tear, but who wouldn’t? However, she is also of the mind to take life by the horns and get on with it. After her crisis she was back to work within a week and although she has had some physical and emotional ups and downs she has been building up her overall fitness with trips to the gym 3 times a week, dance classes and also jogging. She is becoming more aware of when to increase her hydrocortisone and has plans for her career. Don’t let Addison’s hold you back.
            Best Wishes
            ps the ADSHG web site is great for advice and how to tackle the doctors etc.

  2. tina parker-deslandes

    Hello my name is Tina i am 41 with two girls 21 and 13 it is so hard to put on a happy face daily for them but that is my job to be a mother first and then sick second to all with addison’s you will be in my pray and best of wishes to you and all that comes with the condition ..

    • tina parker-deslandes

      Tina marie here just wanted to know if anyone lives in columbus ga with addison’s nice to talk to people around the world but would be nice to meet people in same town to talk and listen to someone that knows what i am going through.

      • Hi Tina and everyone!

        I live in Albany, GA and was just diagnosed. I am waiting to get in with an Endocrinologist and struggling through work on partial disability. So many questions and relatively few answers! I was confirmed with a ACTH stim test and am still in shock.

        I would love to hear from you. My email is kimlyb61@gmail.com.

        Thanks,

        Kim

  3. My thoughts and prayers are with everyone who is diagnosed as an Addisons patient. My son John who is only 30 had an Addisons crisis on Boxing Day last year leading to Cardiac Arrest and as a result, suffered Hypoxic Brain Injury. All this came about because of a virus, and the failure of the Cortisone to absorb into his system. John has made a good recovery, having had lots of help from Neuro-Physio, but obviously contines to be a sick lad.

    • Hi i heard about your sons Addison’s crisis i have those a lot i mostly end up in a coma bc of this disease i have a hard time waking up and so i cant take my meds right they nee to create a different way of getting the cortef to us

      • Hi,
        My son who is 31 was just diagnosed with Addison’s after 18 months of being ill, but also may have liver cancer. I am so glad that we at least found out it was making him so sick, he just came home yesterday after almost dying earlier in the week from his undiagnosed illness. We live in Washington State and would be interested in knowing of and talking to others about this condition. I wish the best to you .
        Susan

      • Hi,
        My son just came home yesterday diagnosed with Addison’s after 18 months of being ill. I noticed you commented about having another way to get your cortisone when to sick to take the pills, our Drs sent us home with an injectable cortisone shot when he gets to ill to take it orally, if you have not already been given this you may ask your doctors about it. I wish you the best.
        Susan

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