Monday, October 15, 2007
'Twenty One Years On-Living with Addison's Disease
 The following story is fact-it contains crucial information which is definitely worth reading & will hopefully give you a better understanding about the illness. I recently had the opportunity of interview a woman living with Addison’s disease. This is her story and although she wishes to remain anonymous, I am truly grateful to her for allowing me to share with the public. I refer to her as 'Jane' to protect her identity. Jane was 29 when first diagnosed with Addison’s disease. The year was 1986, somewhere around the month of March. A single lady living your average life but when the sudden onset of the following symptoms began to cause concern, Jane knew there was something wrong and sought immediate help through her doctor. Jane's s symptoms were as followed: Feeling nauseated for no apparent reason One of the tell tale signs were the inside of her mouth and palms of her hands had become very dark in colour, almost dirty to look at. This included the nipples. Extreme constant craving for salt Feeling weak/lethargic Upon her visit with her local G.P she thought he wasn't really listening to her until she showed him the inside of her mouth which caught him by surprise. In turn, he referred Jane onto a skin specialist who sent her for blood tests. As Jane vaguely recalls, the test involved the taking of blood samples over a couple of hours in order to check her electrolytes, this was then followed by a visit to the dental hospital in Sydney. Just a note to the reader: When we reached this part of her journey, Jane made it clear to me that the events which occurred from this point onward were nothing short of humiliating- she became quite uncomfortable but wished to continue on. Jane arrived at the dental hospital and was immediately ushered into a room whereby she suddenly found herself confronted by a group of students. Jane was left feeling vulnerable to these strangers as they explored her like a guinea pig! At no point had anyone requested Jane's permission for this to happen and Jane certainly did not give it. In any case whereby we are dealing with the community, there has always been a code of ethics placed in order to protect us, especially when dealing with those in the medical profession. We simply place all trust in doctors believing they are able to attend to our medical needs and we often do so without question. In this case the doctor in charge obviously paid little attention to this rule and to that of his patient. A sad reality which too often goes unsaid. Ethically and morally our lives are placed literally in their hands but unfortunately we the patient need to be alert to any sign of neglect as a measure of safeguard. In Jane's case, being thrown before these students felt somewhat like she had become the prey of these predators. The doctor allowed these people to poke and prod while Jane sat horrified. He stood by as each student followed orders to view the insides of her mouth not at all concerned that his patient may have been threatened by this ordeal. After approximately half an hour, Jane had to speak up and the only words she could let out were that of a request they place a paper bag over her head! This seemed to amuse them no end, many laughing at her remark. Jane was quick to rise from her seat and made a speedy exit out of the room and the building. Returning to her skin specialist, the information she relayed did not impress this man who in turn sent her onto another doctor (endocrinologist) for further input. This doctor had come highly recommended but sadly lacked any bed side manners so Jane only managed a couple of further appointments. Has anyone noticed that with all this, Jane still had no idea of what was happening? Another reason to be vigilant with questions when seeking medical assistance. A trip back to her local GP, she explained in great detail all that had taken place and was quickly referred to another endocrinologist who thankfully for Jane, not only a local doctor but also a lovely person. "As a person, he has a good sense of humour and I found him so easy to relate with"- This doctor once appearing on an afternoon children's programme where he shared his love of archaeology. Jane built up a great rapport with his secretary who even though no longer works for him still remains in touch! All her symptoms and background were there in his hands and he wasted no time with his diagnosis. It had taken three months to deliberate but now Jane could give this illness a name-Addison’s Disease. A discussion between patient/doctor sorting out all that would be required was dealt with in minutes! The disease would be treated with permanent medication which consisted of oral doses of cortisone, at the time; he placed her on the drug known as Cortate (possibly not still available on market) which was taken three times a day. Unfortunately, as with any new medication our body doesn't always tolerate and this was the case for Jane. Her doctor explained the reason being her body wasn't absorbing the medication so changed it for Hysone and within days, Jane noticed a change for the better. She continued to see this doctor for a few more years until her change in address required a change again in doctors. In December of 1991, Jane suffered what is known as 'Addison’s Crisis' and was quickly hospitalised. Whilst there she was given doses of cortisone for the next couple of days and was released just in time to be with loved ones on Christmas Eve. The practicing doctor at the hospital remains her specialist to this day and continues regular monitoring and other updates. As Jane says, "It is something I need to be constantly aware of and there are times I can only describe some days as my battery has run flat. It doesn't happen often as I am vigilant with my medication but I have noticed taking the tablets later than the usual allocated time can cause extreme bouts of lethargy along with decreased blood pressure" Just as she shared this Jane mentions doctor has her taking Prednisone now to control her blood pressure. This disease has altered Jane's way of life forever and she hopes that by sharing this information others will become aware of its existence. Jane's amazing ability to continue life as normal whilst never knowing from one day to the next what to expect is nothing short of inspirational. "You just do what you have to do what you have to and simply go with these things." says Jane I first met this lovely lady during a series of community health networking and we have remained friends since. I am grateful she has allowed to share these private and often very painful details with us as the message of awareness is an important one! Addison’s disease has been around since the days of Thomas Addison, who was the first person to ever witness the illness and consequently named after him. It is an auto immune illness which lasts a lifetime Symptoms can vary from person to person Long term affects for women- Lose libido-married women require a testosterone patch which helps to boost energy levels (comes in pill form but do not necessarily work for everyone) Kills off female hormones For both male/female- Perspiration-when sweating too much the patient must re-hydrate with fluids, and replace sodium with anything salty Adrenal glands destroyed which then cause associated symptoms such as 'all the above' (varying from patient/patient) As mentioned previously, there are always associated risks/problems when taking medication especially long-term. i.e.: Cortisone (steroids) can have the following side affects- weight gain fluid retention increased appetite steroids can often lead to osteoporosis & diabetes in some cases medication has been known to bring on depression Unless diagnosed quickly, this disease CAN be fatal! If a patient happens to suffer the 'Addison’s crisis' and cannot reach medical attention/help it can lead to death. For further information please visit these links:- In Australia- Addison’s Disease Association www.addisons.org.au To receive their newsletter you can do so by subscribing online Addison’s Awareness Week 7th - 11th May, 2007 You may contact either online or write to Noreen Secomb for additional information/support P.O Box 2436, Coffs Harbour 2450 Telephone: (02)6652 4761 Fax: (02)6652 4 861 Email: Sue O’Brien (secretary) secretary@addisons.org.au Books available: ‘Addison’s Disease Patients‘-Survey in Australia-Diagnosis & Management by Dr. HadhaniTo purchase a copy please contact Noreen via email or through her mailing address… Cost of book-$28.50 which includes postage/handling (only within Australia) and orders are payable by Money Orders/Cheques but feel free to enquire whether or not Paypal is acceptable. For all other States~ Victoria Julia Kelly Telephone: (03)9739 4265 OR Christine Dobbin on (03)5331 4114 Email: juliacan2000@yahoo.com.au QLD Laura Armstrong (07)3821 0308 Email: larmstrong1@bigpond.com.au S.A Alison Clayfield (08)8358 5738 W.A Tracy Sciberras (08)9306 2512 Email: tracy465@yahoo.com A.C.T Robin Hart (02)6288 3568 Email: nhart@netspeed.com.au TASMANIA Robert Howe (03)6427 7743 With the ever growing need for awareness to a vast range of diseases I hope readers found the information provided helpful. Over the coming weeks I will be out & about hunting down other important medical information and updates so stay tuned and stay healthy! By Debbie Stevens |
